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Date: 28.11.2009
From: Lynn

Subject: psoriatic arthritis i am new to this forum

hi i was diagnosed with pa 6 months ago had realy bad painful feet for months, sent from one doctor to another until i could not walk properly, then i was sent to a reumy who after awhile said i definetly had psa waiting to go on metetrexate, i think thats how you spell it. i have had psoriasis since i was thirteen months old. just lately i have started with swollen and very painful fingers, toes, feet, knees. painful back hips oh all over .I just feel completely washed out and tired all the time sorry to moan so much, i have got an appointment with rummy on the 8th of december to start on the mtxrt
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Date: 28.11.2009
From: connor

Subject: Re: psoriatic arthritis i am new to this forum

Hello Lynn

Sorry to hear about your PA.

I've also got it. Was diagnosed with it about ten months ago. I know what you mean about the tiredness. One minute I can feel quite normal, apart from the pain in my hands, back & knees and then for no accountable reason I feel totally exhausted.

I started on the Methotrexate on the 5th October, but to be honest I've felt no benefit yet, but my Rheumatologist has told me that it can take about 12 weeks to cut in. So am patiently waiting to see what happens.

I've had bouts of Psoriasis for about 35 years on and off, but to be honest not nearly as bad as some people get it.

Anyway best of luck with the Methotrexate I hope it does you some good.

Regards Connor.
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Date: 28.11.2009
From: lisa

Subject: Re: psoriatic arthritis i am new to this forum

hello lynn

sorry to hear youre having a bad time

ive had pa a number of years and on mtx i understand how you feel give mxt time, it just settles things down. the fatigue is hard ive learnt to listen to my body try and rest when you feel exhausted, not always easy at work!! but i have a strong coffee and a breath of fresh air helps. the important thing is your not alone, best of luck with mtx xx
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Date: 28.11.2009
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

hello conner sorry to hear you have got it,hope the
mtx starts to help soon.hello lisa i will have to take your advise and listen to my body. its just so hard wen you have been so active and thank you for listening to my moans xxx
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Date: 28.11.2009
From: Kirsty

Subject: Re: psoriatic arthritis i am new to this forum

Hey welcome to the forum!! :D
I think tiredness if a really common thing with any arthritis but we just have to stick together...and not do too much!
xx
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Date: 28.11.2009
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

Thanks for the welcome kirsty, you are all so nice on this site xx
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Date: 29.11.2009
From: jill

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lirsty long time no har..how ya doing, hows uni? hope ya keeping well xx

Lynn hi there and welcome, we r a gr8 forum and we r on here nost of the time, altho ive been unwell for weeks now, i pop in and try and support , but cant always do that at mo...but there r always peopel in here that r Upbeat and we try and raise each others spirits, we hav ea joke at times and it get us thru..... do u claim DLA...even if u work u can claim it, we r entitled to it ok....pls apply..... if u have any worries at all, we talk about anything and everything on here, and we do get close to each other, ecpescially if u find u get on really well with one of us...some of us meet up on face book and have a giggle too..... stay Positive, Positivity is everything!!! goood luck and come bk to us soon xx
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Date: 29.11.2009
From: jill

Subject: Re: psoriatic arthritis i am new to this forum

Lisa hi there, how u doing? xx
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Date: 29.11.2009
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

Hi jill thanks for the welcome and the advise, yes i have just claimed DLA and was awarded the high rate of mobility and the low rate of La my GP and rheumy advised me to apply and backed up my claim with letters.I have never been on facebook will have to sign up. it is so comforting to know there are other people who can relate to this horrible disease.Anyway i will have to go and pack a bag we are going to see a good friend tomorrow who has just moved to javea in spain will be gone till friday will come bk soon my best wishes to everyone chin up xx
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Date: 25.07.2010
From: Jon

Subject: Re: psoriatic arthritis i am new to this forum

Hi, I'm new on here, I'm on my 3rd week of methetrexate. No change yet. Like everyone else ive been told up to 12 weeks to make a difference. Sent off my DLA form today, does anyone know how long it takes to get a reply? I have psoriatic arthritis! do I have a chance of getting it?
Good forum everyone sounds very friendly.
Jon
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Date: 27.07.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi Jon think you do need at least 12 weeks to see any changes with the mtxt. I think you should get a reply from DLA in a few weeks saying they have got your claim form, and will inform you of any other requirements they need. I think it can take up to 12 weeks. Hope the mtxt works for you good luck and welcome there are a lovely bunch of guys on here. Let us know how you get on. t.c
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Date: 27.07.2010
From: Abbie

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynn & Jon and welcome to the forum everyone here is so helpful and supportive so feel free to post anything anytime. I'm 33 and was diagnosed with PA almost a yr ago. I'm on mtx injections, have depot steroid shots and off and on oral steroids, i'm about to start Ciclosporin and take morphine for the pain. Don't expect miracles from the mtx it can take 6months to do anything. I really didn't think it's done anything for me but two weeks off it for an infection and I was word than ever so Rheumy said even though seems to be doing nothing, disease has obviously worsened and mtx keeping it down to original level. Anyway Go well X
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Date: 27.07.2010
From: hunnybunny

Subject: Re: psoriatic arthritis i am new to this forum

Hello,I'm new to this forum.I'm 37 yrs old,have 4 kids (the youngest is 4 mths) and work as a postwoman (maternity leave just now).3 weeks ago I got diagnosed with pa.last week I started on methotrexate and arcoxia.I feel constant tired and my legs feel weak,painful and tingling.my right hip and shoulder are sore and it feels like hot water is running down on them.but the worst pain is in my neck which gives me daily headaches.the only painkiller I get is co-codamol.
in the mornings my husband has to roll me over in bed and he also needs to help me on some days to get dressed.I'm so frustrated.oh and I noticed that my right hand is shacky.how will I be able to return to work,carry 11-16 kg bags when I can't even hold my 4 mths old or 16 mths old?sometimes I've the feeling people (doctors) don't take me serious.what can I do?
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Date: 27.07.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi hunnybunny How do you cope with this disease...and 4 little ones oh my god you deserve a medal.The only thing i can say is hang on in there the mtxt can take 3 to 6 months you need to go back to rheumy or GP and get some decent pain relieve and keep nagging till you get them. I take my hat of to you I realy do. And welcome to this forum you will find so many helpful and supportive guys on here, let us know how you get on. take care. x
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Date: 27.07.2010
From: Sally

Subject: Re: psoriatic arthritis i am new to this forum

hi Hunny, you can't go back to work until the disease gets under control. Under the Disability Discrimination Act your employers are obliged to take steps to make it possible for you to work. I don't know that much about it but if you can find a local Citizen's Advice Bureau or other advice agency they will be able to help you with all the details. Also, are you a member of a union? You might get some advice/support there too. As Lynn says, get some decent pain relief and ask about steroid injections/tablets. They may help you a lot. They certainly help me a lot. They have side effects but you have to weigh up the pros and cons.
Good luck. Keep in touch.
x
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Date: 30.07.2010
From: Tom H

Subject: Re: psoriatic arthritis i am new to this forum

Sorry to sound uninformed, but what is a DLA form?

Thanks
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Date: 30.07.2010
From: Sally

Subject: Re: psoriatic arthritis i am new to this forum

Disability Living Allowance. You can apply for it if you have any kind of disability.
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Date: 30.07.2010
From: Tom H

Subject: Re: psoriatic arthritis i am new to this forum

Thanks

Even if I'm still working?
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Date: 30.07.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Yes Tom you can still claim it if you are working..
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Date: 15.08.2010
From: jacob

Subject: Re: psoriatic arthritis i am new to this forum

has anyone managed to get s blue badge based on this condition,i find that after walking for 5mins the feet go on fire and if i could park closer it would help loads.
btw i am 38 with 5 kids and have been diagnosed with pa 5 months ago and am about to go on mtx but its real scary times for me.
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Date: 15.08.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Jacob If you get the high rate of mobility allowance you can get a blue badge from your local council, you will need 2 passport photos and £2. thats how I got mine and it is a godsend. There is another way you can get one, but I am not sure maybe one of the guys on here can help. take care.
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Date: 16.08.2010
From: Christine.

Subject: Re: psoriatic arthritis i am new to this forum

Hmm. Thinking that maybe PA will show in next bloods. Woken up today with trigger finger bad, toes itchy and feeling fat and feet very achy to walk on. Saying that I have had two meals with wheat in the past two days and had chronic indigestion. So could be my wheat intollerance. Think I am trying to fool myself into thinking it's not PA when it really could be. :@(
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Date: 01.09.2010
From: prncss1230

Subject: Re: psoriatic arthritis i am new to this forum

I too suffer from PsA - My doctor gave me the disability placard because he doesn't want me walking too far in wet or icy parking lots and falling, which could blow a tendon - in Illinois the doc fills out the form and sends it into the Secretary of Stae, just takes a few weeks to get it.
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Date: 08.09.2010
From: Teresa

Subject: Re: psoriatic arthritis i am new to this forum

Hi, how disabled do you have to be to claim for DLA. I'm working but find it very difficult to walk far at the moment even from the car park at work! I'm affected in my feet, knee, hip, hands and I just wondered how bad does it have to be. Don't want to claim if they don't think I'm bad enough. Thanks
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Date: 10.09.2010
From: Joanne Ellington

Subject: Re: psoriatic arthritis i am new to this forum

been to docs today,with achey joints practically all over body,had severe erythrodermic psoriasis since the age of 6,always had the pitting in my nails too,doc sending me for bloods,said its likely that i have PA im 30 now with 5 children,youngest 8mnths this seems like a good forum,top of my spine and my left wrist is worse at the mo,thanks for hearing me !!Jo
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Date: 10.09.2010
From: Joanne

Subject: Re: psoriatic arthritis i am new to this forum

been to docs today,with achey joints practically all over body,had severe erythrodermic psoriasis since the age of 6,always had the pitting in my nails too,doc sending me for bloods,said its likely that i have PA im 30 now with 5 children,youngest 8mnths this seems like a good forum,top of my spine and my left wrist is worse at the mo,thanks for hearing me !!Jo
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Date: 10.09.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi JO, and welcome to the forum. Sorry to hear you may have PA It sounds like your doctors on to it ok and you should get started on the right meds to help you. Although it might take some time to find the right one, Hang on in there and be patient. Please let us know how you get on , lots of lovely guys on hear you can come and have a moan anytime,scream or shout we dont mind. Take Care.
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Date: 20.09.2010
From: Paul Clayton

Subject: Re: psoriatic arthritis i am new to this forum

Im also new to this forum and ive been diagnosed with PA...i have been feeling sore for just over a year now mainly in my feet and my knee but now its gone to my hand..all of my pains are on my right hand side which is wierd. Ive just been diagnosed with in the last 6 weeks, its taken the nhs all this time and i had to pay to go see a specialist and he diangosed me that night how frustrating. oh ps are any of your middle fingers tingling?? i dont wanna go to the docs and complain about things again lol
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Date: 20.09.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi Paul It can take a long to diagnose PA It took over a year for me to get the right dgns, I have it in the same joints on both sides of the body.I also have it in the tendons and all the soft tissue, and yes I too get tingling in my fingers. Have you been started on any medication yet to slow the disease down? let us know how you get on and take care.
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Date: 28.09.2010
From: weezie

Subject: Re: psoriatic arthritis i am new to this forum

Hi I'm new to this, never added comments on a forum before! Got diagnosed with PA Apr 09, have been on prednisolone and diclofenac since diagnosis. Started on mtx in Sept 09, bad nausea so tried sub cut injections to help, still had nausea but it did help the pain after about 3-4 mths, been off mtx since June, tried leflunomide, even worse side effects so now no DMARD at all just relying on steroids & anti inflam. Having a flare at the mo also. Just great to share with others who know what the hell you r talking about x
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Date: 01.10.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi weezie, and welcome to the forum, I think I got diagnosed about the same time. I cant take anti inflams because of meds for heart condition, Take mtxt what a bummer, headaches, nausea, cold sores and mouth ulcers.Take folic acid 6 times a week, but not on mtxt day.Which has stopped the headaches and nausea, but still getting the mouth probs. Know what you mean about the flares finding it hard to get around the house just lately. Hope you get some relief soon. Take Care.
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Date: 01.10.2010
From: Sally

Subject: Re: psoriatic arthritis i am new to this forum

hi Weezie, welcome. I've got sero negative inflammatory arthritis diagnosed last year. Was on methotrexate but had to come off it recently and am only on steroids. I'm struggling with painful joints but waiting for rheumy appt coming up.
Hope they sort something out for you soon.
xx
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Date: 07.11.2010
From: Lynn Buckley

Subject: Re: psoriatic arthritis i am new to this forum

Hi lynn I know exactly what you mean it was my arm it started in then suddenly everything hurt by the time i got to the rheumy. I am on a tonne of tablets but i am also on methotrexate and it takes a few weeks to work but you will notice a difference. I am on the injection as the tablet form made me sick but at least you know if one form of it doesn't agree with you there is always another option but there are so many people who are in the same boat. Hope all goes well
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Date: 07.11.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynn, thats a bit confusing 2 lynn bs, I am hopefully going to start on the injections in a couple of weeks. I am also on a new trial drug, had my second lot of injections last week but its going to be a few months before I feel any difference, so my rheumy nurse told me. Take Care.x
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Date: 07.12.2010
From: Sharon Wright

Subject: Re: psoriatic arthritis i am new to this forum

Hello all, I have just been diagnosed with PA yesterday, and I am very frightened to tell the truth. I have lumps on the inner elbow, feet, hands and wrists and not to mention the pain that comes with them. The Doctor has started me on steroids, methotrexate, and folic acid. I have codeine for the pain. I am about to start the steriods tonight and the methotrexate in a day or two, I have heard that there are pretty bad side effects with this medication and that it is a form of chemotherapy?? I went from a tingle in my fingers to huge lumps on my inner elbows and severe pain in feet, ancles and wrists within 8 weeks. My PA has been described by my rheumatologist as aggresive and I am scared that if I went from tingly fingers to what it is now within 8 weeks, then what will it be like within another 3 months whilst waiting for the methotrexate to kick in. You all seem very lovely and I feel very alone with this, as I dare not tell my family as I do not want them to worry. Has anyone had any side effects, or has anyone had it aggresive like me?? Thank you all for reading. Sharon
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Date: 07.12.2010
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sharon, please dont be afraid of the meds, methotrexate is a chemotherapy drug but it is just a very mild dose compered to what they give cancer patients. You need to start your meds as soon as poss, It will slow the disease down. And yes it does not suit everyone but we dont know that till we try it, and then if you do get side affects they can still help with the folic acid. and if that doesnt work then you will be put on something else. The tablets didnt suit me so now I am on the injections which hopefully will be better. I realy think you would be wise to tell your family, you will have all that support and help If you dont tell them how are they going to know when you are in pain and need help to do things.Its just that now my family know I have so much help and support from them,Please have a think about telling your family, There help and support can make it less frightening. Take Care and let us know how you get on with your meds there is always somebody that will listen AND WE DO CARE. x
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Date: 08.12.2010
From: louloubelle

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sharon

I agree with Lynn B; you should tell your family because unfortunately there will be times when you need their help. People, on the whole, are generally lovely. I've been having a really tough year and support has come from the most unlikely of places and I haven't had to feel guilty or like a charity case because I've come to realise people genuinly care!

Don't worry about the side effects of the medication; you are made aware of ALL possible side effects so you know what to look out for. I was on mtx for quite a while without any side effects at all. I'm now on chemotherapy for breast cancer and have had minimal side effects at massive doses so you may be lucky enough to suffer no side effects - you just have to take a leap of faith and, as you know what the side effects are, if you get them then something can be done about them!

I've had PA since I was 9 years old which just started in my knees. As I went through my teenage years, more and more joints developed PA. I now have PA in all of my large joints and some of the smaller finger and toe joints. I found that when a joint was newly affected the symptoms were quite unbearable. As time goes on the pain and discomfort does lessen!

I did have to have my hips replaced in my early 20s (I'm now 31) as the PA is so aggressive but I'd had PA for over 10 years and there were no biologics available until 10 years ago. If you have been on a couple of medications without it improving the PA then your rheumy will look at putting you on biologics (anti-tnf) such as enbrel which I was put on after my 2nd hip replacement. While on the anti-tnf, my symptoms were practically none. So have faith in your rheumy; if the mtx works then it is brilliant, if not there are other meds that may work and failing that anti-tnf, which is a bit of a "last resort" medication has fantastic effects on about 80% of sufferers of PA. So there is light at the end of the tunnel.

Keep your chin up Sharon, stay positive! Listen to your body and rest when you need to and allow people to offer you there support!!!

Take care
Lou x
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Date: 30.12.2010
From: Sharon

Subject: Re: psoriatic arthritis i am new to this forum

Hello Lynn and Lou,
Please can I first say that I am sorry to hear that you both have this condition, and that I am so sad to hear that you have breast cancer Lou, I really hope everything goes great with your treatment etc... xx

I really appreciate your feedback and help. I do feel quite alone at the moment as no one but yourselves can even begin to know how this Psoriatic Arthritis feels.

Since my first posting on here I have got a lot worse, I now have it in my elbows, shoulders, hands, wrists, feet, ankles, groin/pelvis/lowerback, and just starting in my knees. I have it symetrical and it hurts like crazy to the point I am in tears a lot of the time. I am not a little push over person that has a mild pain thresh, I do have quite a strong pain thresh and this is breaking that barrier.

I am so tired I totally wipe out after very minor movement, this upsets me no end as I am a person that cannot sit still for a second. I am constantly getting told "sit down" and I have been for many years, now I feel like I am fighting against this because this wants me to rest and I do not want to give in. I have taken your advise and I told my children, just incase they wondered why their mum looks like this. I have told my brother and he has offered to take me to my appts etc... Thank you for that very genuine and helpful advise.

I have lost over a stone in weight and people are pulling me asking why I look so ill. I feel rather silly telling anyone so I just say my insomnia has kicked in really bad. (I have suffered from very bad insomnia for 3 years now). This is not releated to my PA. I look very pale and feel and look like rubbish.

This is my fourth week into Steroids, Methotrexate, Folic Acid and Codeine. I do feel that I am getting worse by the day to tell the truth, but my R Nurse said that I would feel like this because it is aggresive, and because the Methotrexate takes at least 6 - 12 weeks to kick in. She did also advise me that once it has kicked in that I would not get a plain sail through it, as it has a tendency to keep flaring up. I have to go every two weeks for bloods, every month for lung tests, every month for scans and xray's, they are going to do a full body MRI also. Sometimes I feel that the medication may be making me feel worse, but the R nurse said imagine how I would be if I was not taking the meds. That did reasure me that I am doing the right thing, but one part of me still thinks what if.

I have got terrible breast bone pain, my youngest son gave me a hug just before I was diagnosed with PA and I yellped out in pain and it brought tears to my eyes right away. My son wondered what he had done wrong and I had to assure him that he had done nothing wrong at all. I told the R about this and he said that the PA will be in the breast bone also.

Does anyone else have this like this, I only have very mild Psoriasis on my skin and yet my Arthritis is this aggresive.

Thank you for making me part of this family network forum, I do not feel alone any more. Hope all goes well for all, and have a Fantastic "NEW YEAR" Sharon xxxx
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Date: 30.12.2010
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sharon sorry to read you feel so unwell. I have Inflammatory Arthritis but I do periodically get chest pain and the GP said it's to do with the Arthritis. It's called " costochondritis ". I'm not saying yours is the same but thought I would just advise you of this. Hope you will feel a lot better when the meds kick in ;0)Link here to costochondritis :-

http://www.associatedcontent.com/article/558267/what_is_costochondritis.html?cat=70
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Date: 30.12.2010
From: bsk

Subject: Re: psoriatic arthritis i am new to this forum

hi Sharon, ditto everything KJ has said. It is very difficult waiting for the drugs to kick in. Most of us have been there or are, in my case, still there. I get worried about every new pain but am beginning to recognise it is all the same thing. The chest pain is particularly disturbing. I hope the mtx works for you soon. S
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Date: 31.12.2010
From: Sharon W

Subject: The symptoms of Psoriatic Arthritis get worse very fast

Hello all,
Thank you very much for your support.
I have had a look at that link Kay Jay thank you, I will be speaking to my R Nurse about it on Tuesday again. BSK thank you for your help also, I am hoping that I can recognise it soon too!! How long have you been on MTX and have you had any side effect??

Does anyone feel that the pains are in the long bones aswell as the joints. My shin bones hurt very bad, that I cannot take the presure of my weight without limping with pain.

Then the bones that run from my groin down to my knee hurt very bad too!! I do not know if these pains are starting somewhere else (Hips / Knees) and running down, or I indeed have pains in them bones, does anyone else have these symptoms??

Hope all of our members have a fantastic New Year. xx
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Date: 01.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sharon. Glad to be of help ;0) Well tonight I've got throbbing pain and burning in my right mid knuckle and it's driving me mad and I can;t sleep. The pain shoots from the knuckle to the wrist then up to the elbow. And I'm thinking to myself ...... well happy bloody new year !! lol.

I should let your Nurse know about the pains you have I have stabbing pain in my groin and ...... well all over really. I have joked to my little sis that I think somebody has a voodoo doll of me and keeps sticking the pins in. Hope we all feel better in 2011 !!
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Date: 01.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

Hello KJ, thank you very much for that I needed a laugh!! I have said at least a million times within a few weeks "what the heck did I do in my previous life". My nurse told me to aply for Disability Money Benefit, do you know anything about this? I said I would rather have me back than any amount of money, but if I am entitled to it then I may try. Has anyone on here had this money or know anything about it??
Thank you again for the close humour, I get told that I have alien feet because my second toe is quite a bit longer than what is meant to be my big toe, I can actually agree with this statement now as my toes are a little deformed now due to the PA ha ah!! xx
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Date: 01.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

How odd Sharon ? My 2nd toes are bigger than my big toe as well !! Spooky. My late Dad had the same only his were even longer they had to remove an extra joint when he was younger.

DLA [ Disability Living Allowance ] - Most definately go to a Citizens Advice to help you fill in the form !! I tried myself and was refused - then it went to a Tribunal which was refused again - then I took my new form to a Citizens Advice centre and the lady there helped me fill it in and now I've got it indefinetly. Good Luck ;0)
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Date: 02.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

Hello KJ, that is very odd indeed haha!! Your little toes do not bend to the side where you walk on your toe nail by any chance do they?? that would be a bit freakish haha!!

With regards to the DLA are we classed as disabled enough to get this? What did they say you got turned down for, or do they not disclose that?? I have checked on the web site to see what I have to do to claim it, and I did not realise it was that much extra money. I would be happy with the low rate at the moment to pay for my physio, and medications.

Thank you very much for all your help!! xx
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Date: 03.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Prepare to be freaked Sharon - yes they do !! I walk on the tip of my little toes because they go under the next toe. The Podiatrist made some Gell tubes for me to put on the next toe to splay them more. Have you seen a Podiatrist yet ? If not where I live [ South Yorks ] you can self refer to see an NHS Podiatrist. Or ask your GP about it.

DLA - I was refused because they said I could walk more than 100 meters. But when the CA lady filled my 2nd application out she had me walking outside her office and noted down all my difficulties. I have a large bone spur near my left ankle so I have to wear an ankle brace and I have to use a stick and I walk VERY slowly.

Why are you paying for a Physio? Ask to be referred to an NHS one through your Rheumatologist they can also refer you to an Occupational Therapist who can give you walking aids, aids for the home like a shower seat and high toilet seat. They also made me a fab ' resting ' splint and a wrist splint and tubes for my fingers. Which ALL help me no end.

I can't have Steroids because I'm Diabetic and Steroids push up blood sugar level.
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Date: 05.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

Hello KJ, this is very wierd I wonder if all people with PA have these alien feet haha!! I will have a look for a Podiatrist that is local thank you for that.

I will ask for the DLA forms the next time I go to the R Nurse, I went yesterday and forgot to ask her. I was only in the room 2 mins and I was told that I have to have the steroid injection into my backside. I am on oral steroids and I questioned why I would need it and she said that my hips and pelvis have swelled up again, so that was a quick fix. Today my arm from the bloods is throbbing and my backside from the injection. I do not ever have any visible vein and they have to go in more than 3 times each time.

You are right about the physio also KJ, the R Nurse said that I should not be paying for it and that they will refer me to a arthritis specialist physio rather than a multi purpose one that I pay for now. So I will see how this goes.

Your help is great!!
I feel like we are family!! xx
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Date: 05.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

We may very well be Sharon [ my real 1st name is nearly like yours only with a K in front !! ]. I'm sure I've read on the net that people with a larger 2nd toe are prone to Arthritis conditions ? Anybody else noticed theirs ?

I've got to have an Isotope body scan because my bloods and xrays appear ' normal' I'm just trying to find out if any other peeps have had to have this ?

Thanks for replying Sharon it's great we can all help each other :0)
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Date: 08.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

Hello KJ,

That is very wierd about the bid toe thing, I was waiting for anyone else to reply to say they had it and I was going to mention it to my R Nurse...

What is the Isotape Scan??
What does that test for??

I asked the R Nurse for the DLA form and she said that I am better off completing it on line as it takes a long time to complete it. To tell the truth I looked at it and found it very daunting indeed. I have opened it 5 times and got as far as filling in my name, address etc... I browsed through the questions and In my head I can put all the examples down and fit all the criteria, but when it comes to typing it up my mind tells me to come back and do it later!! I am not much good am I haha!!

I asked my R Nurse about the terrible pains in my right breast bone, and she said that it is part of the PA also. I really think that something else is going on inside me, surely this Arthrits cannot be the sole cause of all this pain and lack of movement can it??

Please can anyone offer any insight as to if they have been diagnosed with Arthritis but there has also been something else underline??

Thank you all, Take Care, Sharon xx
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Date: 08.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Sharon the Rhemie says that my bloods and xrays are normal I'm confused because last Jan he put me on Plaquenil for Inflammatory Arthritis and now he says different !! Anyway apprently the only test for inflammatory A is this Isoptope scan. The Nurse said if this shows no inflammation then it must be the Fibromyalgia. Even more confusing is that I didn't think that Fibro causes swelling in the hands and feet but the Nurse said it can !! So I'm in limbo land again.

It's best to get a DLA form from a job/benefits centre as they will put a date on the top and if awarded it you get it from that date. Also take the form to a Citizens Advice Bureau or benefits help office for them to help you fill it in. I only got DLA when the Citizens Advise did the form for me.

The pain in your breast bone does sound like costochondritis which can be associated with PA and Fibro [I get it sometimes ] see this link : http://www.associatedcontent.com/article/2477138/costochondritis_a_painful_condition.html?cat=5

Arthritis can be very painful and it makes you very stiff and tired Sharon so I shouldn't worry that anything else is going on. If the meds aren't working for you then you must let the Rheumy know this as they should try other ones and give you a decent painkiller. Take care xx
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Date: 09.01.2011
From: Tom H

Subject: Re: psoriatic arthritis i am new to this forum

My 2nd toes are much bigger than my big toes, I've been known for it for years and had the mick ripped out of me for it over the years!
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Date: 10.01.2011
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

My 2nd toes are also much bigger than my big toes, And they are turning round so the nail is facing the big toe, if you get what I mean.... weird!!
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Date: 10.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

OMG this big toe thing is really wierd!!
I always thought there was only me with this wierd alien toe. But this is quite freaky that other PA patients have got it too!!
I think we should keep an eye on how many people actually put this on this forum.
To all my fellow aliens out there, we are not alone haha!!
Take Care, xx
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Date: 10.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

He He Sharon funny ;0)
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Date: 10.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Hey fellow Aliens read this it's called Mortons Toe from Wikipedia:

" Dr. Janet Travell, MD, coauthor of The Trigger Point Manual, concluded that Mortonās Toe was "a major perpetrator of musculoskeletal dysfunction and pain." While the prevalence of Mortonās Toe is less than 50% in the general population, among people suffering from musculoskeletal pain and seeking medical help, it is thought to be well over 80%. The reason Mortonās Toe is often a precursor to musculoskeletal pain is its association with excessive pronation of the foot. When weight bearing, the longitudinal arch of the foot drops, and the ankle rolls inward.

This excessive pronation causes two major postural and functional problems:

1. The leg is functionally shortened or lengthened.
2. the leg is rotated internally.

A functionally shortened toe behaves just like a structural short leg, unbalancing the pelvis by dropping one hip lower. This can cause various degrees of scoliosis (improper lateral curves of the spine). The internally rotated leg causes a forward rotation of the pelvis, typically more on the side where the foot hyperpronates the most. The forward rotation of the hips causes changes in the kyphotic (anterior/posterior) curves of the spine and in general causes a forward-leaning, head-forward posture. The compromised posture combined with the torques created by internal leg rotation is often the cause of both joint and muscle pain ranging from knee and hip pain to low and general back pain and shoulder and neck pain. It is also believed by some to be associated with headaches and TMJ dysfunction, although this is not universally accepted .

Restoring the Mortonās toe to normal function with proprioceptive orthotics can help alleviate numerous problems of the feet such as Metatarsalgia, hammer toes, bunions, Morton's neuroma, Plantar Fasciitis, and general fatigue of the feet ".

It used to be thought that only Royalty had toes like ours ....... if only .......
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Date: 11.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

Hello KJ,

Thank you for posting this it has opened my eyes.

I wonder if we get any other aliens saying that they have the same thing as us??

Or the person who wrote that report may have actually been and alien and they made all that up to cover it up ha ha!! I am quite gobsmacked at it.

I am back at work tomorrow, not sure if I am going to handle it very well as I am unable to hardly move at the moment with pain all round.

Does anyone else have time off work because of the un-predictable days we get with this PA??

Speak to you all soon xx
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Date: 11.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Sharon they might be keeping it all a secret we shall have to get Scully + Mulder on the case [ cue X files music!! ]

Hope you will feel better for work tomorrow I'll be thinking of you ;0)
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Date: 12.01.2011
From: Maz

Subject: Re: psoriatic arthritis i am new to this forum

I have been told many times by those who are supposed to know that having a 2nd toe longer than the big toe is a sign of being a 'Celt' !!
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Date: 15.01.2011
From: Sharon W

Subject: Re: psoriatic arthritis i am new to this forum

I am a little confused to say the least!!
What is a "Celt" please forgive my lack of knowledge.
I hope it is better than an alien?? haha!!
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Date: 15.01.2011
From: KayJay

Subject: Re: psoriatic arthritis i am new to this forum

Sharon I think a Celt [ Celtic ] is a person who originates [ going right back through the centuries ] from Scotland/Ireland ? Could be wrong but that's what I thought.
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Date: 25.02.2011
From: becky

Subject: Re: psoriatic arthritis i am new to this forum

hi i have never been on here but i have just been told i have pa i am currently pregnant and it seems to have slighty calm down (touch wood) i was just wondering if anyone knows if i can claim dla for this condition? i already claim it for my daughtr as she has a syndrome so im not sure if i can claim it for me or if i can with this pa, its so painful when i get a bout of it i can barely walk in the morning and the nurse who saw me told me the pain was in my head lol im sure she would not be saying this if it was happening to her but i went to see a rhemotologist yesterday and he said i had it i have been suffering with psoriasis for 15 years quite bad on my elbows and body but not as bad as i have ssen some people have it so i was surprised to have pa x
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Date: 25.02.2011
From: x kerry x

Subject: Re: psoriatic arthritis i am new to this forum

hi becky, ive also reccently been diagnosed with pa, and im also pregnant but mine hasnt went into remission which apparently it tends to do when pregnant, its actually got worse! I have only got a tiny patch of dry skin on my neck, i had psoriasis quite bad when i was 15 (ten years ago) but i grew out of it and barely suffer at all with it now. I know what you mean about being surprised at the diagnosis since we dont have the skin condition as bad as others but from what i can gather, arthritis of any type effects everyone differently. I was also diagnosed with hyper mobility syndrome, which has similar symptoms to arthritis. Its hard to get your head round why your body feels this way isnt it...sometimes i hurt so much that i cant tell where im hurting and where im not....i get so used to being in pain that i dont even remember how im supposed to feel anymore! If you need any advice or just wana let off some hormornal anti arthritis steam together just let me know! Good luck with everything, Kerry x
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Date: 02.03.2011
From: mazzabear`

Subject: I am new to this forum

I have had pernicious anaemia for around 7 years and found out last year that I have Psa, asthma and COPD.Just found out I also have Sjogrens syndome (get your lucky white heather here) lol. I have got an appeal tribunal for DLA next month and don't fancy my chances. i am finding work harder every day. I would appreciate any advice. My head seems to be full of fog, my left eye does not focus properly and I am perpetually exhausted. I stil expect to be found fit to work. I am at my wits end.
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Date: 04.03.2011
From: Gaynor

Subject: Re: psoriatic arthritis i am new to this forum

Hey Mazzabear - I work with DLA appeals all the time (supporting people with disabilities in my job). Don't put up with any crap from them. Chances are they will turn you down. I have theory that, given the dramatic increase in people I am having to help, that this seems to be the automatic result for most people. Make sure you appeal. Get as many letters from as many medical professionals as you can. Write down in detail what you experience. Don't limit yourself to their stupid little form - I just wrote a 9 page appeal for someone (we won!). Oh ... and make sure you ask for a copy of the points awarded. You are entitled to do that. If they are wrong in their assessment. TELL THEM!! And then tell them WHY they are wrong - in detail. Don't assume they know or understand anything. Best of luck with your assessment.
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Date: 12.03.2011
From: rosie

Subject: Re: psoriatic arthritis i am new to this forum

I have never done anything like this before so I'm new to the forum but felt I needed to write after reading your comments.I was diagnosed with pa last year after having aches,pains and deformed fingers for years and getting no real answers.Lately I've began to suffer tingling in my hand and weakness in my legs I saw a new doc who refered me to an orthapaedic surgeon and I had a mri scan last week just waiting for results.I had very bad psoriasis during my teens{am 56 now}only tabs I'm on are codeine and paracetamol was on naproxen until I had a bleed on my stomach 2yrs ago.I've been off sick for 2 weeks now coz I couldn't cope with the pain any longer and as I work at argos I couldn't manage my job anymore,with the standing and lifting all day long.I wasn't sure if I'd be eligible for DLA but after reading your advice I might apply. thanks
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Date: 13.03.2011
From: Moira

Subject: Re: psoriatic arthritis i am new to this forum

Hi,I'm new to this too,so am a bit nervous.I've suffered for years from aches and pains in my neck,back,shoulders and hands,felt I was fobbed off with physio and diclofenac told all blood tests were negative and was probably arthritis.Last year I was refered to a rhemo who gave me an injection and put me on plaquenil,but unfortunately I had terrible side effects after 3 weeks.Now I'm only on codeine and paracetamol as my GP took me off naproxen following a bleed and now he's taken tramadol away.Some days the pain is unbearable and I feel abandoned, at the moment I am off work sick.My Gp said he'd transfer me to a different hospital as this one was doing nothing for me after the plaquenil incident.I get terrible pain in my left hip and my legs feel weak also tingling in my hands,is this all the pa symptoms or is something else going on,some days I feel so tired too.Glad I found this forum as its great to speak to other sufferers and learn about DLA thanks
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Date: 13.03.2011
From: Moira

Subject: Re: psoriatic arthritis i am new to this forum

Hi,its Moira again,forgot to mention that although the rhumo told me I had inf arthritis she informed my Gp I had pa!
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Date: 13.03.2011
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

hi all 1st time on here was great to read that there are other people with pa like me mine started last june it is agressive i have it in my hands,wrists feet ankles lower back shoulder and pretty much in pain all over i have been on a few different types of meds but my dr is putting me on mtx as soon as she has spoke to my rhymatoligist, i am constantly tired and having to lie down do not sleep well at night i have been signed off work to, and i have just applied for dla not sure if i will get it or not.
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Date: 13.03.2011
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

hi moira i was reading that u took naproxen i have been given them as i was taken off diclofenic because it upset my stomach but reading all the comments about bleeding in the stomach has really put me off, i also take tramadol but i feel woozy most of the time although still in pain.
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Date: 13.03.2011
From: becky

Subject: Re: psoriatic arthritis i am new to this forum

thank you kerry, funny mine has started getting really bad again,i thought it had stopped for a while, how far gone are you kerry and what tablets are you taking for it?x
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Date: 14.03.2011
From: x kerry x

Subject: Re: psoriatic arthritis i am new to this forum

im only 3 months gone becky, how about you? Im not taking anything at the moment, paracetemol does nothing and i had a bad reaction to sulfasalazine so im just dealing with the pain and having lots of rest. How about you? My hands and wrists are bad today, i thought they had been a bit better but obviously not. It seems that my hips and knees and shoulders have been worse since ive been pregnant, when usually i only have a few bad days with them joints and my hands had been better, which are usually bad every day. Do you worry about how youre guna cope when the baby is here? Thats my main worry, some days its so hard to look after myself, im terryfied im guna have a bad flare and not be able to give my baby all the care it needs. Do you mind if i ask how old you are becky? Hope your pregnancy is going well and youre not in too much pain!
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Date: 15.03.2011
From: becky

Subject: Re: psoriatic arthritis i am new to this forum

hi kerry im 30. This is my 4th child and im 6 months pregnant.I don't tend to get bad wrists its mainly my feet the only thig that seems to take the pain away is cocodamol 30/500 but i will need to stop taking them soon but i dread it as i think the pain will be awful when i have stopped. As worrying as it is you will cope kerry you may need extra support from people and health vistors.I would be good if you can get things like a changing/bathing station they are a blessing and an easy push buggy i have got a stokke and there amazing.Have you put a claim for dla? have you had xrays yet?xxx
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Date: 15.03.2011
From: davina

Subject: Re: psoriatic arthritis i am new to this forum

hi becky i'm thinking about pregnacy and can you tell me what meds you are on while preggers, if any?

kerry you will always find a way no matter what your pain is you do it. good luck with the rest of your pregnancies. congrats x
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Date: 15.03.2011
From: x kerry x

Subject: Re: psoriatic arthritis i am new to this forum

thanks davina :) its just something you have to deal with isnt it. I had been on sulfasalazine when i fell pregnant, i think i probably started taking them the same day i got pregnant (new years day...great way to bring in the new year, lol, i think my fiancee must have been trying to take my mind off starting new meds ;p ) but i had a bad reaction to them and ended up in hospital, unaware i was pregnant at the time. Ive since found out sulfa is safe to take during pregnancy, coz it was a big worry for me that it would have affected the baby, especially so early in the pregnancy.

Becky, thanks for that advice, ive been trying to find a light weight buggy with a large handle so its easier to grip, ill have to check them ones out. Ive found some good websites with helpful tips and advice for new mums with arthritis. Ive got plenty of help thankfully, my family and my fiancees family live 5 mins away, and im lucky enough to not have to work as my fiancee looks after me, hes self employed too so we have plenty of time to look after the baby. I just keep thinking about these young girls with no partners, no job and no support and i think even though im unlucky to have arthritis, im very lucky to be in my situation. I worry if my hips will cope with the weight when i get bigger, or when i give birth...but then every new mum has countless worries dont they...we've just got different ones to other mums! Good luck both of you, hope everything goes well xx
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Date: 15.03.2011
From: moira

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynn,hope you'll be ok on naproxen,I was at first and to be honest my pains and stiffness weren't as bad then,its just escalated since I've been taken off the naproxen,so there is hope for you,good luck
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Date: 16.03.2011
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

hi moira thanks but i think i will need 2 stop the naproxen they r making me fell sick all the time and upsetting my stomach, i take omeprazole before each dose but still doesnt helpx
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Date: 21.03.2011
From: jan

Subject: Re: psoriatic arthritis i am new to this forum

hi my name is jan i have been diagnosed with psoriatic arthritic 8 weeks ago and looking for information thankyou
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Date: 25.03.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi jan sorry to hear about your diagnosis where do u find the pain the most?? mine started last june been pretty much in agony ever since i am off work on sick pay at the moment i have tried about 5 or 6 anti-inflammatorys and still swelling and sore, how did yours start??x
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Date: 26.03.2011
From: bobbyjoe

Subject: Re: psoriatic arthritis i am new to this forum

have you tried the benefits and work forum very helpful for dla information and advice
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Date: 26.03.2011
From: bobbyjoe

Subject: Re: psoriatic arthritis i am new to this forum

hi am awaiting a definate diagnose seems pretty obvious to me as i have tendonitis carpal tunnel tenosynovitis which comes and goes in patches of days or weeks or even hours lumps on inside of elbows and behind knees (which could be bursitis)seems to be settling a bit now, tired alot burning pain in legs tired legs at nite jumpy legs which keep me awake as when they go i hurt alot have had mst and morphine patches on tramadol for pain at the mo and lyrica and paracetamol also 600mg of brufen cant use codeine it makes me swell. i just crash with tiredness an lota pain in various joints rheumy says rare to get arthritis in elbows and that i have fybromyalgia tennis elbow and golfers elbow also(as if i could play any of those lol) and get burning hands and feet/toes my left foot has a swollen red toe next to the litllun an is bent out an have been suffering for a good few yrs i have been using a wheelchair for distance as any further than 10 foot an thats it. i find capsaicin cream (chilli cream anti inflammatory) with the hands even at night help am now giving it a go with my back cant do any harm drs prescribed it use sparingly just remember use 1 finger to put on and wash scrub nails after can be very painful if gets in some places. had bloods not shown anything each time or scans but my hands/tendons were swollen as were my elbows and knees also my feet swell and are sore to walk on had mri on back have a herniated disc and a bone spur on another its causing a trapped nerve in spine causing alot of pain in my right outer upper thigh and inner thigh also pain down front of legs have had psoriasis for 45 years had knee replacement 3yr ago it still not right need other done also the end joints in my fingers all swell an go red and are bending oh and i also have THE LONG TOE beside the the big toe lol they wont treat me properly till they have a definate diagnosis either pa or osteo
this is a very interesting and helpful site thankyou all
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Date: 26.03.2011
From: janton20@btinternet.com

Subject: Re: psoriatic arthritis i am new to this forum

hi lynn i have psoriasis of the skin since i was 14 years old and i am 54 now, mine is in my knees and ankles and in my lower back. most of the time i am in agoney like your self, some days it is worse then other days pain killers help a little.how long did it take you to get diagnosed with pa and thankyou for your replay jan
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Date: 30.03.2011
From: Constance

Subject: Re: psoriatic arthritis i am new to this forum

Can anyone help, I have just been diagnosed with PA after long time treated for Carpel Tunnel,the benefit system is a nightmare, now being prescribed methotrexate, really worried!
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Date: 30.03.2011
From: Constance

Subject: Re: psoriatic arthritis i am new to this forum

Can anyone help, I have just been diagnosed with PA after long time treated for Carpel Tunnel,the benefit system is a nightmare, now being prescribed methotrexate, really worried!
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Date: 30.03.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi jan i have only been to rhematoligist once goin back in few weeks both her and my doctor are pretty sure i have pa my bloods all come back clear which rules out ra i go back and see her in a couple of weeks they are talking about starting me on methotrexate which i am not sure about i am only 34 and have 3 young kids i am in constant pain and spaced out most of time on tramadol it is a nightmare.
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Date: 31.03.2011
From: Jonny

Subject: Re: psoriatic arthritis i am new to this forum

Hi Jan. Hi Lynn. I'm a sufferer. I'm 28 and was diagnosed about 3 years back. I have some inflamed joints (in pain) and terrible fatigue. I started on methotrexate but it didn't really suit me well (had a little dizziness and nausea + the fact you cant drink alcohol on them didn't help). So, I've recently started Enbrel (Anti-TNF injection) - OMG, what a difference! The swelling and pain has eased drastically and I'm less tired and able to work better in the day and stay awake past 9 O'clock at night! If Methotrexate aint the one for you, push your Rhumy to get you on Enbrel! Mind you. I had a tooth out 4-5 weeks back and caught a gum infection, the infection has never been severe but its still lingering about 4-5 weeks on! If you go on Enbrel then you have to be careful as it is possible you may pick up a real serious infection. I've been off Enbrel for about 5 weeks now and boy what a difference. I'm tried and fatigued all the time, my affected joints are inflamed and in pain. My recommendations... do your research and get to understand your condition - your cant turn your back on it (you have it and that's that). Once you understand it, make changes to help adapt to it. Its not and never will be easy from here on but you only have on life and one shot so try your very hardest to keep strong and get on.
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Date: 01.04.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi jonny thanks for the advice i am doing alot of research at the moment will c my rhumy at end of month and will talk things through my joints are so swollen and agony just now and like u i am in bed early every night which has an effect on my home life, did u apply for dla i was at the cab they recommended i apply but i have heard its difficult to get? any advise?.
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Date: 02.04.2011
From: Jonny

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynn, nah, not applied for any financial help. Still working in an office so i'm able to work. I don't know anything about getting DLA or so forth. I guess you gotta talk with your local jobcentre or something? Any advice from anyone else? I'm interested to find out!?
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Date: 02.04.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi jonny i was working up until lately i am off sick at the moment it is just so hard when i feel so tired and sore all the time plus i have 3 young kids so that makes things harder,got a meeting with cab next week they have advised me to claim for dla im not sure if i am entitled to anything my husband works full time so i will just wait and see.
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Date: 02.04.2011
From: Jonny

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynn - who are cab? Cheers.
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Date: 03.04.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi jonny the cab r the citezen advice beaurea
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Date: 05.04.2011
From: Nadia

Subject: Re: Info on steroid infusions & MTX injections please

Hello All
Very interesting reading all your notes and learnings. I am in Australia, diagnosed with Psoriatic Arthritis over 2 years ago, after having the skin condition psoriassis for 15 years.

Started with MTX & Pred, then added Leflunomine, but only minor improvement. Taking large folinic acid doses 5 days a week to counter MTX side effects (especially mouth / tounge ulcers)(Lurcovorin).

Embrel worked wonders for me mid last year, but only for10 weeks, but then the benefits reduced. When I was well I was able to garden, walk, do household chores and was really enjoying myself.

Am in middle of flare up right now, pain in knees prevent mobility, can't work as I can't concentrate or think properly.
- changed pain relief from Panadeine Forte to Tramadol,
- awaiting pred infusion this week to try and knock the pain on the head,
- changing MTX to injection instead of tablets to get a more reliable absorbtion,
- changing from Embrel to Humira to see if it makes any difference.

I've read Divina's notes on infusion, but would appreciate hearing from anyone who has experience in MTX injections or Pred infusions.
Many thanks
Nadia
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Date: 06.04.2011
From: chell

Subject: Re: psoriatic arthritis i am new to this forum

PLEASE help as im eager to know if i have this PA ive had OA for 25 yrs although its possible i was born with it always been very active throughout my teenage years and after having children ive recently been waking up in the nyt with a burning raging pain like my legs on fire and cant move it and my knees hurt severely ive had xrays to see if i have OA in them but it come back negative and one doc said i had siatica in my legs this started 2 years ago but like i say has got worse
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Date: 06.04.2011
From: chell

Subject: Re: psoriatic arthritis i am new to this forum

hi connor is the psa asociated with psoriasis do you have it also it says it belongs together on the internet its just i have had OA 25 years and just this year got a red dry rash on my cheeks and doc said it was rosecea but my knees and left leg really hurt me like burn and go reddish and swell and i wake up in the nyt and cant move my leg so im thinking ive been misdiagnosed one doctor told me i had siaticia and physio said i havent and it defered pain from my hips but it all seems to be coming together on my own reasearch please shine some light if you have had similar symptoms ty
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Date: 16.04.2011
From: Emma Rowlands

Subject: Re: psoriatic arthritis i am new to this forum

Hi all, I was diagnosed with PA @ 15, am now 31 with 3 children, have had psoriasis since I was a baby. I was on methotrexate for about a year, it worked great at first but then It just stopped working, I also have ankylosing spondolosis an in August had an op on my spine due to degeneration. I have applied for DLA 3 times so far and am currently awaiting my appeal...the Doc they sent to assess had never heard of PA!!?? He was about 90. My PA affects all my joints and I suffer from chronic fatigue, Today I can barely walk...My ankles and feet don't want to play ball, I am currently just taking pain relief but have been put forward to try Leflunomide for my PA but I am putting it off as I know no-one who is taking it or taken it? My PCT won't put me on biologic response modifying drugs until I try this as they are too expensive and I have to have tried 2 disease modifying drugs first!? Ploddng on is all I do, you would have thought after 15 years it would get easier but truth be known I have learnt to keep my pain to myself and put on a brave face and try to carry on but some days depression takes over and I lock myself away as much as I can....is this a life? I think not!
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Date: 17.04.2011
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi Emma, I also have pa have had psoriasis since I was A baby. I am now 54yrs old I am currently on mtx injections as the tablets had to many side effects, I also have hid the pain my advise to you DONT... let them know how bloody painful it is.. tell them how much it hurts " dont hide it " tell them how much pain you are in, because believe me they will let you carry on, and you wont be helping your self with the depression It will take over your life. THEY ARE THERE TO HELP YOU, And believe me they will as long as you keep telling them, be a pain in the butt, but please dont give up.... I was just like you, I am now on a drug trial and my life has completely turned around Because I kept on till they listened. Please dont let the depression get a hold of you. Stand up to them. Take Care. xx
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Date: 17.04.2011
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

well said and as for the DLA they are a bigger pain i am also fighting them with an appeal. Bless you chin up!! tell everyone who will listen how bad yoe feel. Dont lock yourself away, we all do the stiff upper lip bit and its not good for us.Take care lets us know how you are getting on X
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Date: 03.05.2011
From: lynnh

Subject: Re: psoriatic arthritis i am new to this forum

hi i just got my decision back from dlA saying i wasnt to get anything at all, i think it is a disgrace that they feel like this when we have to struggle through every day feeling like this, i am still in agony and find each day a struggle i have had my meds changed to sulphsalazine which are making me quite ill i have lost my appetitie and feel quite sick ive got to have my bloods taken every 2 weeks and continue with all my other meds anti-inflammatorys, tramadol etc, then the people at the dla say your entitiled to nothing it is soul destroying, i have however sent an appeal letter and i am waiting on a reply...... i am not very hopefull however thought i should at least give it a shot. im sorry thats my wee rant over
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Date: 04.05.2011
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Oh dear lynnh, i know how you feel im appealing and still waiting they sent a letter to say it can take up to 13weeks. I have said on here before they just have no idea and need to walk in our shoes for one day. I have OA and have had back surgery and elbow surgery. My hands are so painful all the time and my feet kill me. My back even after surgery is murder as they couldnt do all the correction needed due to the OA.To-day has been a rough day or should i say yesterday. I cant sleep to-night for the pain.My tramadol is not working!!!!! Heeeeelp. It is soul destroying but try not to let them beat you. Hope you appeal goes well.
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Date: 04.05.2011
From: Creswick

Subject: Re: psoriatic arthritis i am new to this forum

Hi
I have been on Leflunomide for 18 months. Take it daily along with an Enbrel injection weekly.

For the first three months Enbrel was wonderful but now I think it is only the Leflunomide that keeps me going (along with steroid injection!!).

There will be side effects in the beginning but these do go in time and are far outweighted by the results. I had to come off Leflunomide for a month twice, once for stomach problems and once for an infection, but both times rapidly went down hill so that's why I think it is the Leflunomide and not the Enbrel that helps - good luck!
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Date: 05.05.2011
From: Curtis

Subject: Re: psoriatic arthritis i am new to this forum

It's people like us who always get shafted by the government

I've just had a letter saying they have taken mine and my partners working tax credits off us because we earn over £30,600 per year between us which also means I'll loose my disabled working persons allowance which is somethin like £48 per week, they make me sick, it's hard enough still working at all with my codition and now they are penalising me for trying to lead a normal life and working £30,000 a year is nothing especially with a child!!!!!!!!
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Date: 07.05.2011
From: lynnh

Subject: Re: psoriatic arthritis i am new to this forum

ive had to stop the sulphsalazine covered in a rash from head to toe now ive got imflamation of the stomach i am just waiting to hear back from rhumy what tabs r next!!! i got my appeal letter in today saying that they will get back to me with a decision im not holding out much hope though. its awful curtis that they are stopping your money as you say you are out there working and trying to lead a normal life!!! they make me sick they would not last 1 day felling like this......
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Date: 10.05.2011
From: Nadia

Subject: Good results from Steroid Injection, MTX injections and Leflunomide

Hi there

Just to let you all know that I had my steroid injection (1gm prednisolone) and after 3 days the pain really started to abate.
Also changing MTX from tablets to injection has very much decreased the side effects, as Lynn B mentions above, so my Fridays are now much easier.
Emma - I've been on Leflunomide for 2 years now and have not had any real side effects and they seem to help. I'm also just waiting to change from Embrel to Humira to see if it gives any more relief. Do keep going along the 'drug route' as it's definately worth going on Leflunomide in order to get to the TNF'injections.
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Date: 10.05.2011
From: Sean

Subject: Re: psoriatic arthritis i am new to this forum

Hi All

I was diagnosed with PA in Nov 10 at the age of 40, I was a painter and decorator and fell off my ladder in Sept 09, although I escaped with severe bruising within a couple of weeks I was experiencing severe joint pain in my hands, hips, knees and feet. My GP eventually referred me back to my rhummy who has treated me for several years for painful ankles. It seems my rhummy wrote to my GP at least a year previously advising that they thought I had underlying PA, but my GP had never mentioned it!!! I have been unable to work since December and am now on sulfasalzine, calcitrol (as the sulphasalazine is affecting my liver) and have just been prescribed anti-depressants (which have knocked me for six) as they cause increased drowsiness, which on my on top of my normal exhaustion makes me really good company. My partner Val is a social worker (she is typing this for me) and spoke to my rhummy about benefits as I can't even hold a paintbrush now but was told I would not be entitled to anything, after reading the comments on here, she is going to fill in the DLA forms tomorrow. Anyway just wanted to say Hi and thanks for all the information.
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Date: 10.05.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi sean yeah it is def a good idea to fill in the forms you never know until you try, i have had my 1st application turned down butr i am waiting on news of my 1st appeal, i have just been taken off sulphsalazine after 3 weeks because of the side effects i had a rash from head to toe i lost my appetite as well when on it i lost 7 pounds in the 3 weeks i was on it. hope you get yours forms filled out it might be useful to go to your local cab they filled mines out for me they are a great help.
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Date: 12.05.2011
From: Sadie

Subject: Re: psoriatic arthritis i am new to this forum

Hi everyone,

My name is Sadie and i'm 31. I have been reading through all of your comments and felt that i finally found somewhere that i could discuss my conditions with as like someone mentioned on here, half the time nobody has heard of Psoriatic arthritis so don't really want to discuss it. I was diagnosed with PA approx 2 years ago after numerous tests and finding out i have a trace of Lupus disease, Raynauds syndrome, spondulytus ( not sure if thats correct spelling), Erythema Nodosum immune disorder and mild heart condition which is under observation at the moment. I know that these are all linked to my Thyroid condition which i have suffered with since i was 10 years old. Until i found this forum i felt that very isolated as i am sure alot of you did, plus it's not very nice going to see the Rheumatologist feeling very very young compared to other patients and wondering why lifes so unfair?!?!
I have always suffered with psoriasis since i was an infant as the condition runs in my family. Since i have been diagnosed with the PA i have had various treatments like steroid injections, but nothing has helped, so now they say the only thing they can put me on is Methotrexate because of my heart condition it is the only thing suitable. Although i do have concerns about the side effects as the specialist explained that they are strong tablets with bad side effect, but didn't really give me much info on them??, other than your hair falling out, which clearly made me panic instantly!
I have PA in my feet/ankles, knees, hips, back, but my most painful areas are my hands. The skin on my palms is dry, cracked and sore permanently, i am unable to touch fabrics, polish plastics bags, pretty much anything sets swelling off, the worst culprit being water!! Everything just causes them to swell constantly and cause alot of pain. I just wondered if anyone else suffers like this with their hands and if you have any tips for me??, i do wear splints, but this causes friction and soreness arrrgghhh they drive me mad!!!!
Like Sean said before after reading the comments on here i am considering filling out some DLA forms, because of the permanent pain in my hands and other areas and fatigue it has cost me my job!
Sorry if i have gone on abit!! thanks for listening peeps :)
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Date: 13.05.2011
From: Sean

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sadie
Nice to hear from you, my PA affects the same areas as you but my biggest problems at the minute is fatigue, anyway try using olive oil on your hands. Don't know if this will work for you but it certainly seems to help my feet I put it on at night, once or twice a week, it won't do anything for the pain but may help with the skin.
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Date: 13.05.2011
From: lynnh

Subject: Re: psoriatic arthritis i am new to this forum

hi sadie yes i think you should try and apply for dla you never know until you try. I know how you feel i get so many people asking whats wrong with my hands because ive got the splints on and when i say its arthritis they kind of look at you as if you are lying. my hands are extremely sore and swell up i find turning the tap off sore and trying to get jars opened are causing me probs as well.
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Date: 13.05.2011
From: rachel

Subject: Re: psoriatic arthritis i am new to this forum

hi sadie my husband has pa and is having to wear splints like you,he is having hot wax treatment on his hands which his physio is doing he says whilst his hands are in the wax it takes the pain away completly but soon comes back but has helped with his skin, he is also having accupuncture which is more for his well being so he doesnt hit rock bottom x
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Date: 16.05.2011
From: Colin

Subject: Re: psoriatic arthritis i am new to this forum

Hi I have just been diagnosed with PA at the age of 49. History is:- in 2009 went to docs with pain in my right knee, progressivley in 2010 the pain got so bad had to stop patrol duties(PC) Whent to 3 different physios who couldn't solve the problem. Eventually got to have key hole surgery in Nov 2010 ended up DVT and bleeding in the knee, but the situation is now my right knee is still in a flexed position and cant be straigtened, even under anisthetic the surgeon couldn't straighten it!!
I have since been reffered to RHY tologist and he is thinking of putting me on METH drug, but I am concerned about the damage it can do as its serious kick arse drug, in addition to I like a drink in the evening and I guess the two dont mix??
Other joints that have swelled are my feet, left knee, wrists are painful etc.
My left knee is started to have a permanent flex to it so my posture is all wrong causing me back pain etc.
Maybe coincidence, large toe nails have gone black on both feet!!!
My question is more about the drug:- Is it safe, what are the side effects, can it damage the liver etc.Look forward to your comments.
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Date: 16.05.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi colin sorry to hear your diagnosis i am not on methatrexate at the moment but i think my rhumy is going to put me on them i have just been taken off sulphsalazine after allergic reaction. my finger nails have ridges on them and my left big toe nail on my foot has went black my rhumy says part of pa. Are you still at work i am off sick the now as im in so much pain it does get you down although i try and not let it. The methatrexate does have alot of side affects but if it helps the pain then it may be worth a try you can always stop them if they are not agreeing with you. i think you take all your dose only once a week and feel quite sick etc for 24 to 48 hours afterwards, i will keep you posted and let you know if i get put on them i do know that you are not supossed to drink alcohol on they as they can cause liver damage.i hope this helps any questions just ask.
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Date: 17.05.2011
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi colin and lynn h, just to let you know methotrexate is not for the pain, it is an immune supresant sos about spelling. What it actually does is to slow your immune system down, there is no cure for this blummin disease, but they can slow it down with all the dmards and biological drugs. Yes there are some side affects, but you are constantly checked with regular blood tests, and you can drink alcohol but in moderation, some people can and some people cant. They can give you meds for the side affects, I was taking 6 tablets a week, but they did not agree with me and now I have the injections which are so much better. Please dont disregard the drug till you have tried it, if it doesnt work they can always try you on another, hope this helps. Take Care.
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Date: 17.05.2011
From: rachel

Subject: Re: psoriatic arthritis i am new to this forum

hi colin you can have a drink but not supposed to have more than 10 units in a week so my husband used to save them up for a friday nite and after his first half he was drunk so cheap nite!!! On a serious not yes med can cause liver damage but with blood tests fortnightly they can keep an eye on this,it is no miracle cure hes been on it 4 months and has been increased 3 times but not really any improvement but like anything everyone is different and worth a try if it does work. He lost his appatiete and weight has rolled off him but that has improved just recently,he has a excellent gang of professionals helping him and thankfully everything shows up on blood tests so they know exactly how he feels,good luck,rachel
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Date: 17.05.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi thanks for your posts on the methetrexate i know it is a DMARD and not used for pain relief i have tramadol for that it is similar to the sulphsalazine which i took for 3 weeks before being taken off them due to side effects, as you say anything is worth a try if my rhumy says ive to go on them then i will give them a shot, i do worry about the weight loss as i lost 7 pounds in the 3 weeks i was taking the sulpha i only weigh under 8 stone so cant really afford to loss more, hopefully i wont get that side effect. Lynn B what other meds do you take along with your injections? do you have to give yourself the jags? thanks for all your help.
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Date: 17.05.2011
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynn h I give myself the injections every tuesday night. They are pre filled syringes and it is so easy, I am also on a trial drug which I started last September, and I have 2 injections every 4 weeks at the hospital. It is a 2year trial and I have noticed a lot of changes for the better. I take codeine phosphate and parasetamol for the pain (Tramadol made me sick) I can not take anti inflams because I have asthma and cronic heart disease and angina, so I take a lot of other meds for them. Take Care x
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Date: 17.05.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi lynn god it sounds awful i dont think i would like injections but if i had to i would, tramadol make me feel quite sick as well but ive been getting better since im getting used to them i take arxocia anti imflamatrys paracetemol along with the tramadol and i take omeprezole for my stomach alot of the other tabs i have taken have upset my stomach but the arcoxia seem to be the best although they dont realli help the pain mayb just a little, i had a steroid injection 5 weeks ago and i was put on sulphsalazine i had tried hydrocloqurine beforte this but had no effect i was taken off the sulpha a few weeks ago as i was allergic so now i am waiting on word from my rhumy about a new appointment, i am off work at the moment and i find most days a struggle some days although very few i feel half normal but then it jaut goes back to the way it was. I have 3 primary school kids so it is tough getting up in the mornings and getting them to school most days i sleep a good 2-3 hours when they are at school i am so tired all the time. Sorry to rant on but it is so helpful talking to people that know exactly what you are going through.

take carex
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Date: 17.05.2011
From: Lynn B

Subject: Re: psoriatic arthritis i am new to this forum

Hi lynn know what you mean about the tiredness,I have just been given early retirement on health grounds so at least I dont have to worry about work, I take my hat of to you 3 small children!! how on earth do you cope..... My family are all grown up and have left, I dont know if I could cope with this disease and young children!! and work!! you realy do deserve a medal. Take Care x
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Date: 17.05.2011
From: lynn h

Subject: Re: psoriatic arthritis i am new to this forum

hi lynn aw thanks that made me feel better it is difficult but my children are great they know mummy has not been well and gets tired alot they try and help me around the house it is so sweet i am just glad they are not babies any more that was hard i had 3 kids under 2 years old (i have twins) now i definatley would have got a medal for that if i had pa as well lol, i am 35 this year i thought i was young for getting pa but since i have been on here it is amazing to see people of all different ages.

Take carex
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Date: 18.05.2011
From: colin

Subject: Re: psoriatic arthritis i am new to this forum

Hi to all that answered my questions regarding PA, guess it's case of "suck it and see!" will keep you posted as to how things develop!
Does anyone else constantly itch as one of the conditions?
Rhymee cant give me an answer why my knee is permanently flexed causeing my back posture to cause me problems!

Cheers
colin
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Date: 19.05.2011
From: rachel

Subject: Re: psoriatic arthritis i am new to this forum

hi colin my husband went thro several weeks of constantly itching and then one day just suddenly stopped,nurse had never heard of it but it had happened to others on here x
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Date: 25.05.2011
From: terry

Subject: Re: psoriatic arthritis i am new to this forum

hello could anyone help me i have 3 kids an 1 on the way an want to clam dlv how do i go about this an how honist do i be?
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Date: 25.05.2011
From: Debbie

Subject: Re: psoriatic arthritis i am new to this forum

my partner was diagnosed with PA about a year ago. He only started on MTX about 6 weeks ago as we both wanted 1 more child before he started on this medication and would be unable to do so. Anyway, we have 3 children and 5 months gone with number 4 now. He has a highly physical job working nights. He struggles to get to sleep due to the amount of pain he is in. He tries to get a couple of hours in the day, and more on the evening. He is constantly exhausted but unable to rest properly. After reading on here, he is seriously looking into claiming DLA, even if its so he can slow down at work. How did you all cope with resting? Any advise you can give so he can sleep more? The docs have told him he's not getting nearly enough sleep but most days he struggles to get 4hours during the day and night.
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Date: 25.05.2011
From: Debbie

Subject: Re: psoriatic arthritis i am new to this forum

Hello Gaynor. Have just read your comment. Is there any way we can make contact with you?
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Date: 28.05.2011
From: colin

Subject: Re: psoriatic arthritis i am new to this forum

Hello all, I'm into my 3rd week of the meth drug, yet to experience any side effects, can anyone advise me what to possibley expect( I know we are all different) Prior to commencing the medication I have what I described as serious heart burn! "Is this anything to do with the condition?"
Whats the sleep issue I read about? I'm still able to work, but on restricted hours.
Any advise woulde be greatly received.
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Date: 29.05.2011
From: Pol

Subject: Re: psoriatic arthritis i am new to this forum

Bout ye everyone!

Im Paul from Belfast. 32 yr old. Got PsA in Sept 2010. Am Busted lol. Started Meth (tabs) in Feb and went up to 20mg. Was making me feel rough every day :( Now on 25mg by injection and even rougher - sent home from work twice due to sickness. Have this in my feet, toes, left hip, spine, neck, shoulders, left hand, chest blah blah blah. Have 2 crazy kids and an even crazier wife!!! Think they r gonna take me off meth on tues due to the fact that my disease has moved to new joints since being on it. DLA are headcases. Ive DLA dr coming out this week as all the info provided couldnt help them make a decision???? Im gonna tortute em anyhow lol. Keep the head up! (unless its in yer neck like me!!) Im 32 now what am I going be like in 10 years!!!! Anybody tell me how theres has developed over 5/10 years????
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Date: 29.05.2011
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

hi pol i have the dla coming out 2 see me to i am a nervour wreck i just dont know what they are going to ask i dont sleep great at the best of times but this is not helping me.
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Date: 30.05.2011
From: Pol

Subject: Re:DLA

lynn - google dla doctor questions and that should help. My understanding is that they are more concerned about what you cannot do and what help you need.They already know the condition they just want to know how it affects your mobility and care. Dont presume they know how if affects you - tell em everything!! Dont hold back from them. Let em know how hard it is doing things, or not doing things
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Date: 30.05.2011
From: lynn

Subject: Re: psoriatic arthritis i am new to this forum

thanks pol i will look that up yeah the more i think of it im not as nervous its not as if im joking or anything and i am sure he will see this when he comes out. thanks again
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Date: 31.05.2011
From: George Ashford

Subject: Re: psoriatic arthritis i am new to this forum

Hi Creswick,

Trina has kindly agreed that I can post on here to ask whether anyone is willing/able to take part in some market research. We will pay £250 cash to participants to cover all expenses.

The research will take the form of a face to face interview next week and relates to a new injection device (you wouldn't be required to inject yourself during the interview).

We are looking for people self-injecting with a minimum of 3 months experience. Anyone wishing to take part must be using one of the following:
Enbrel
Humira
Methotrexate

We are particularly interested in anyone aged over 60 or those with severe RA in their hands (but certainly wouldn't exclude any others if they meet the main criteria).

If you are interested and able to travel to central London on the 6th, 7th or 8th of June please do get in touch. Please note that in certain instances we may be able to conduct the interview in your home or place of work if this is more convenient.

For more information on our company (just so you know we are legit!), please visit www.creativemedicalresearch.com.

Thanks,
George
george.ashford@creativemedicalresearch.com
01473 832325
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Date: 01.06.2011
From: colin

Subject: Re: psoriatic arthritis i am new to this forum

can anyone advise what the pain in the chest is that people are referring to...I have excruating pain in the chest right in the centre, which I thought was a heart attack but it was checked out and all ok. Is it part of the condition/

Colin
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Date: 01.06.2011
From: Francesca

Subject: Re: psoriatic arthritis i am new to this forum

yes, I have it too and thought the same, that it was a heart attack. I am told by my GP and Gastro consultant that it has nothing to do with gastro problems and is caused by arthritis in the ribs. I have had central chest pain for years and it can be really sharp stabbing pain sometimes.
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Date: 02.06.2011
From: colin

Subject: Re: psoriatic arthritis i am new to this forum

Cheeeeeeeeeeeeeeers Franchesca I thought I was on my way out!!!!
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Date: 02.06.2011
From: Francesca

Subject: Re: psoriatic arthritis i am new to this forum

your welcome, hope it eases soon. :)
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Date: 07.06.2011
From: sadie

Subject: Re: psoriatic arthritis i am new to this forum

Hey everyone,
sorry for late reply, thanks so much for all your advice. Sean i will try the Olive oil on my hands, even the stuff the skin specialist gives me is useless so il try anything different!!
Lynnh i get what your saying i can completely relate to you with your hands, thats exactly what people react like with me, and it does really make you feel like you should just keep it to yourself. Very frustrating because sometimes you just want to shout out when the pain gets so bad. Is the skin on your hands painful because its so dry too, how do you cope with that? My thumb joints are getting really painful now like you said to the point where i cant open jar and bottle lids, i'm starting the Methotrexate tablets next week which i'm really worried about. My main concern is the hair loss side effect?? and how painful it makes your hair roots on your head, can anyone give me their take on this at all??
Thanks for replying all,
Sade xx
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Date: 07.06.2011
From: sadie

Subject: Re: psoriatic arthritis i am new to this forum

Hi Rachel,
Sorry to hear about your husbands condition. I have tried hot wax treatments as well at the Physio, but felt that it didn't help me much and my skin was soon back to normal after just as dry as before. I gave up on any of the physio treatment just because i felt it a complete waist of time in the end, just something that didnt suit me. However i have never thought of having Acupunture treatment, i might try this as i get really low and when the fatigue kicks in its just miserable! Something like that could really help i think!
Thanks again for the advice Rachel :)
sadie xx
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Date: 07.06.2011
From: rachel

Subject: Re: psoriatic arthritis i am new to this forum

hi sadie
my husbands shying away from the hot wax treatment too,it easys his hands whilst he is there but doesnt last very long, but his main issue was it was a group setting and he is a very private man who doesnt like discussing his problems like i think us women find easy!!! His accupuncture has done wonders hes not as down as he was and got his appetite back,he says its quite painful as he has to lay or sit still for a length of time but feels its worth it, give it a go anythings worth a try for a pick me up, rachel x
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Date: 09.06.2011
From: Julie

Subject: Re: psoriatic arthritis i am new to this forum

Hello I am new to this forum.
I have P.A I have taken a different approach than most in that I am not taking medication think about the long term effects to your health instead I eat very healthy fresh fruit veg fish little red meat I drink water alot and I don't smoke or drink I sit in the sun to help my skin and do walk although I am in a lot of pain.I also feel as people can't see your pain they have little or no time for you.I wish each and everyone of you the best of luck
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Date: 09.06.2011
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi Julie you seem really positive. Long term effects of any drugs sometimes not to beneficial but constant pain also takes its toll on our bodies and mental state. I have been assured by my GP i will be monitored with blood test on a regular basis. I am so glad you cope with your PA without any meds and i hope it stays this way for you. I agree with you if people cannot see what is wrong with you they dont have much sympathy. I must say when i was younger and full of health i also didnt understand the full extent of my Dads arthritis problems, he was in pain every day but hid it well. Unless you have this problem i really dont think people understand it at all. He needed back surgery but was refused when he started with heart problems at 52yrs. I had my back surgery at 57yrs with a pacemaker times have moved on a lot. I am blessed that all the heredity things i seem to have are all treatable and i am being looked after my all my Drs. I feel grateful for all the help wether it be meds therapy surgery or just a chat. Oh and of course this site.Well that was along ramble. Take Care Julie keep smiling X
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Date: 09.06.2011
From: sadie

Subject: Re: psoriatic arthritis i am new to this forum

Hi Julie,
I too have managed to avoid most strong medication other than Naproxen and steroid injections which did nothing, by eating healthy and drinking gallons of water lol, don't drink alcohol or smoke! I have an appointment next week with Rheumatologist nurse to go over side effects etc to prepare me because my Rheumy thinks that my best option is to go on Methotrexate. Well after reading some of the comments on here about the drug i'm absolutely terrified!!!! i'm sure there must be some kind of herbal/natural remedies available that would help my PA ..
If anyone has any ideas please please please do tell :)
Sade x
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Date: 09.06.2011
From: Lee

Subject: Re: psoriatic arthritis i am new to this forum

Hi Julie

It seems ive bypassed all the non medical stuff to ease my pain and discomfort as the GP and Specialist have been hell bent on giving me this med and that med to try and ease things.

Im somewhat blaming myself for not asking more questions and saying no but I put my trust in the Doctors.

I basically went from Co-codamol to Tramadol which I consider a big jump and a strong painkiller and now Im feeling the effects of that and Naproxen.

I think my diet hasnt helped as ive "comfort" ate for a while as it took my mind of things which probably hasnt helped but now thinking a healthier diet and staying away from certain foods would have been better.

I dont mind being on the Sulfasalazine long term as I am ok on it and could Drink thats why I decided on that drug however all the other meds i've been given have just masked more of the side effects and stopped me drinking anyway.etc.

Hindsight I should have just kept taking normal painkillers and tried to increase the sulphasalazine.
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Date: 14.06.2011
From: kimberley sweet

Subject: Re: psoriatic arthritis i am new to this forum

hi im kim ive got 3 young kids had pa for nearly 2 years most joints affected only diagnosed 3mths ago was given methortrexate was concerned of the long time damage more than side affect dident want to be spaced out or nausea being alone to care for my children while partner at work dident take them got to see reum to discuss this ive been doing some research and found a great nautreul pain relief i know carnt believe it myself i was on 2 30mg¦500mg cocodamol and 1 400mg iburaphen tabs every 4 hrs ive gone from 60 to 70 painkillers a week to maybe 1 or 2 a week they are called glucosamine & chondroitin you can get them from most chemist in the valupak they cost about 1.80 and i take 3 a day and cod liver oil is good for your joints give it a try google them see what u think nice to know im not the only 1 thanks
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Date: 15.06.2011
From: lynn r

Subject: Re: psoriatic arthritis i am new to this forum

hi kimberley i was just reaiding your post i like you have 3 young kids and have had pa for a year only recently diagnosed i have tried sulphsalasize and hydroclorqurine and had to be taken off both because of side effects and now they are thinking about mxt i like you am not keen but just usually go with what the specialist says i think i can remember my mum taking something like that you mentioned and she found it helped her immensly so maybe worth looking into that, i do not like the idea of takinbg all these pain meds along with all the other drugs so anything is worth a try .
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Date: 16.06.2011
From: kimberley sweet

Subject: Re: psoriatic arthritis i am new to this forum

hi lynn it is definatly worth a try i havent been without pain killers for so long i might have 2 a week if that my friends mom had cancer shes ok now but its left her with arthritis in her back i got her some of these tabs and they have worked for her aswell shes off her pain killers and you want put a claim in dla because our condition is a disability and will never be cured please let me know if u try them and they work even if i help just 1 person it was worth letting everyone know what helped me
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Date: 27.06.2011
From: colin

Subject: Re: psoriatic arthritis i am new to this forum

Hi has anyone had very high uric acid levels in conjunction with PA?
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Date: 14.07.2011
From: rusty

Subject: Re: psoriatic arthritis i am new to this forum

Likewise,
I was diagnosed back in 2010, quite a shock as like a lot of you I have always been a very busy active person it is the tiredness thats gets to me, but your forum and support definately helps, I no longer feel alone.
Thank you all.
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Date: 04.08.2011
From: Ann Ferguson

Subject: Osteoarthritis i am new to this forum

I have severe osteoarthritis in my neck and knee have to leave my job as telephonist in taxi office am i entitle to DLA
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Date: 04.08.2011
From: Corrina

Subject: Re: psoriatic arthritis i am new to this forum

Hi im also a postwomen with 4 young children and was diagnosed with psoriatic arthritis :( ive had quite a hard year and half but hoping to find some med that will give me releif soon ! My main question is wat happened with your job im in process of being given ill health retirement and im only 30 ?? Maybe u would have some advice or knowledge of how i could fight to keep my job if u had maybe been in this situation before ? Many thanks
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Date: 10.09.2011
From: colin

Subject: Re: psoriatic arthritis i am new to this forum

Hi Corrina, ref your employment I would have thought that as you fall under the disibility act the post office, as an option could offer you redeployment, there should also be consideration to reasonable adjustments like making your round smaller. I'm in similar situation Im a Police Community Support Officer and like you my job entails a lot of walking which I am now unable to do because of the PA. Before you finally except ill health retirement, you need to get them to look at every avenue with regards to redeployment, your union should be doing something to advise you on what to do.
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Date: 19.09.2011
From: maria

Subject: Re: psoriatic arthritis i am new to this forum

hi i have just been told i have ra and am waiting to see a rhumy.it it normal for ra to affect all joints.i just feel am hurting all over.
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Date: 20.09.2011
From: sandra s

Subject: Re: psoriatic arthritis i am new to this forum

hi all i have pa and ive just started getting pain in my collar bone is this normal? anyone else get this,thanks sandra
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Date: 24.09.2011
From: moira

Subject: Re: psoriatic arthritis i am new to this forum

hi everyone,its ages since I was last on here but i have been keeping up to date with you,i have psoriatic arthritis too,have been on sulfa for 9 wks with no real probs,but am still in pain waiting for them to kick in,been told by rhemy it takes 12 wks,am still taking codeine and paracetamol but my doc wanted to take me off all pain relief now im on sulfa,but rheumy says no,sometimes these dont even take the pain away,does anyone else have any better pain relief they could recommend,have terrible pain in my back, hips,spine,neck,shoulders,right leg down to my knee, jaw, and my hands and feet,dont sleep very well,have restless legs so am tired during the day,have also been diagnosed with depression and an underactive thyroid,sorry to go on a bit but id really like your advice,thanks
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Date: 25.09.2011
From: Dave Sharples

Subject: Re: psoriatic arthritis i am new to this forum

Hi all i was diagnosed last week with PA and prescribed sulfa and told to keep on taking my declofenac and co-codamol 30/500 untill the sulfa kicks in. I suffer with pain in my hands, wrists, elbows, shoulders and back as well as in the long bones in my arms, i also have stage 4 osteoartritis in my knees and ankles which the specialists wont operate on as i am only 45 years young and 20 stoneish so they wont stand up to the stress of me using them. I have read that if you have diabetes ( i have ) you cant have the steroid injections. I think the worst part is the acute fatigue all the time i even get up in the mornings with my eyes burning with tiredness, but on the positive side it is good to have the docs find something as i was beginning to wonder if it was just me being soft. I am wondering if anyone has being succesful with their DLA claims and what is the best way to go about claiming. Thanks in anticipation of your replies
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Date: 26.09.2011
From: Dilizjo

Subject: Re: psoriatic arthritis i am new to this forum

Hi Dave, I felt the same way too when I was finally diagnosed with RA...
Now DLA that is something you need to start right away, phone and ask for an application form. Do not rush into filling it in as you have 6 weeks to get it back to them and if successful the benefit will be dated from the date on the form.
You can get information on the best way to complete it from www.consumeractiongroup.co.uk. look under the heading Benefits, Taxcredits and minimum wage. There are stickies there that cover ESA and DLA extensively.
But in short fill out the form as if every day is a bad day. Never put anything like "I like to do this myself as I want to stay independent"
It may be an idea to ask CAB or Welfare rights to help you fill it in.
Also ask your GP to do a letter to confirm what you are saying. Some GPs won't but it is worth asking. When you post the form send it recorded delivery, as they do have a tendency to lose documents, untill you tell them you sent it recorded.
Do not be surprised when you receive a letter telling you that you have been declined, I have never heard of anyone being awarded first time. Then you ring them and ask them to reconsider, at that point they will write to your GP and any other relevant agencies for further evidence.
If the reconsideration is not successful then you have to appeal and go to tribunal, please don't give up at this stage, as over 50% of denials are overturned. Keep at them as they can overturn their decision right up to the tribunal. Provide every piece of evidence you can. You can be represented at the tribunal which is important, by a friend, family member, welfare rights officer or someone from CAB, the latter 2 depend on whether they are available, they don't have to speak but you may need their support.
The process at times will feel stressful but please don't give up there are people that have been on this benefit for years with professionally diagnosed condition such as ours that are being forced to reapply and go through this stupid system.
I personally am awaiting my Tribunal date mainly due to making it clear that I try to battle on and remain independent, which is what this benefit is in place to enable.
When asked on the form about the distance you can walk without having to stop through discomfort and pain anything over 50 metres and they deny it.
They are also starting to deny mobility to people with wheelchairs as they can get around on Public Transport etc... I think the likes of Maria Miller the Minister for the disabled should spend a day in a wheelchair and try to get around....
Also there is a petition at www.ipetitions.com/petition/rheumatoid_arthritis_deserve_benefits/ please sign it and ask anyone you know to do the same.
Anyway enough of my rambling Let us know how you get on and take care xx
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Date: 26.09.2011
From: Linda Mercer

Subject: Re: psoriatic arthritis i am new to this forum

Hi all, I was diagnosed with PA in July and have since been taking sulphasalazine. I was also told i had joint hypermobility and carrying a gene that often links to iritis, which I have had on numerous occassions in the past. I felt so much relief once i was diagnosed, as i had suffered with joint pain for years and felt at last that someone had got to the bottom of the problem. I cannot tell you how much better i feel for reading everyones comments and it has answered my query over the tiredness that comes alongside the PA, which I have been totally frustrated over , as like many of you..I have always been very active and sporty and the realisation that I have to slow down, is now sinking in ! I work as an early years practioner, which is a very physical job and as much as I love it, it is starting to take it's toll on my body and mind. I would like to say...I feel so relieved that i can share my thoughts with people who share the same problem and also...thanks for listening. Best wishes to all !
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Date: 26.09.2011
From: Dave Sharples

Subject: Re: psoriatic arthritis i am new to this forum

Hi Dilizjo
Thanks for the advice i shall get on to DLA to get a claim form straight away and check up on the consumeractiongroup website it is good to know that someone is listening and can advise on the correct course of action
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Date: 27.09.2011
From: Dilizjo

Subject: Re: psoriatic arthritis i am new to this forum

No problem Dave, good luck xx
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Date: 28.09.2011
From: sam

Subject: Re: psoriatic arthritis i am new to this forum

Hi i have just been diagnosed with pa i am 32 yrs old and have suffered with pain in knees back wrists fingers shoulders for last ten years am about to start taking mexth and wondered how others get on with this medication?
Also has anybody been successful with claiming dla
for pa?
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Date: 28.09.2011
From: Dilizjo

Subject: Re: psoriatic arthritis i am new to this forum

Hiya Sam and welcome:)
I'm on methortrexate as well and tbh have not noticed any difference at all. As for the DLA question I am sure there are those out there with PA that have, do not hesitate to start a claim now, as it can take forever and gets backdated to the day of claim, please read the post I wrote a few posts above you will be able to get a lot of info from that:)
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Date: 28.09.2011
From: lynn r

Subject: Re: psoriatic arthritis i am new to this forum

hi sam i am 35 and i have PA stsarted last yeat have been on hydrocloquirine and sulphasalazine and methotrexate been taken off all 3 due to side effects they are a nightmare i have lost oer a stone in weight and felt rubbish on them as for the pa i have it in every joint apart from elbows even my jaws at the moment i have young kids and find it very hard to cope i was awarded high rate mobility and low care i had a doctor visit my home and he over turned my original claim which said i was entitled to nothing, i amd nearly finishing ssp and dreading applying for esa god knows how i will get on good luck hope u feel better soon x
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Date: 01.10.2011
From: sam

Subject: Re: psoriatic arthritis i am new to this forum

Thankyou both so much for your help
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Date: 05.10.2011
From: Sue

Subject: Re: psoriatic arthritis i am new to this forum

I've been diagnosed with SpA (seronegative spondylaropathy, as they can't make up their mind if I have AS or PA in January this year. I was told too that I have Entheospathy which is inflammation causing the joint pain etc which is common in PA.

However I have developed a small patch of skin that's dry, flaky and red at my elbow, since diagnosis.

I've been on MTX for 9 weeks now and upped my dose to 12.5 mg. I feel awfully sick, washed out and told to take folic acid tablets everyday now rather than one day a week to combat side effects.

Since taking MTX, my fingers, toes and hands joints have become more painful..seen Rheumatologist last week and said he didn't understand it...LOL Also will give it the full 3 months to try and hopefully it will help, but at least I can say I gave it a good damn try...

I also take prednisolone and meloxicam, been reducing the steroids since the beginning of the year, now at 2.5 mg...as in the past I became ill from steroid withdrawal.

Hope to become a regular reader and poster in this forum, thanks for reading.
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Date: 01.11.2011
From: Keyleigh

Subject: Re: psoriatic arthritis i am new to this forum

I was diagnosed with PA about 4 1/2 months ago, I have a 16month old son and 2 step children. I struggle everyday, I have PA in my fingers,wrist,knee,spine,neck and shoulder and I'm only 23 years of age. I hate having this condition and I am now taking MTX 15mg a week along with 1 folic acid tablet a week. I am constantly in pain and my partner had to do everything for me. I cannot even open my sons bottles to make him a drink or even open tons of food or prepare a meal. I have applied for DLA but I'm still waiting to hear back from them. I am so glad I've found this forum as I feel so alonemy partner knows how much pain I'm in and he is brilliant and will do anything for me but I don't think he really understands that I cannot take much more of the pain. No tablets seem to take the pain away either. It's so unfair! Sorry for the rant hope everyone else is ok xx
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Date: 01.11.2011
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi Keyleigh, sorry you are in so much pain.I think you should talk to your rhumy team or GP abour pain meds, there isn't any need to be in constant pain. There are lots of different combinations you can try, it does sometimes take a while to find what is best for you. Your partner sounds great!!! Hope you have good outcome with DLA. You take care and hang on in there. Rant all you like we are all here for you. X
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Date: 01.11.2011
From: Keyleigh

Subject: Re: psoriatic arthritis i am new to this forum

Thanks Marlene! I should be due an appt with my rhumatoligist anytime soon. I have been to the doctors and he gave me paracetamol 2tabs x4 a day and also tramadol 2tabs 4x a day and still in pain :-( the MTX make me feel so sick too and I'm always tired! My partner is wonderful I really don't know what I would do without him. Thank you me too,I used to work but had to stop working as I was just in pain all time and always phoning in sick or booking days holidays off as most days it takes me 20-30 mins to get outa bed xx
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Date: 02.11.2011
From: Max

Subject: Re: psoriatic arthritis

Hi people from psoriatic arthritis world, my name is Max my story is a bit different than most of the people here, I have started a severe pain to one of my hand for which i was woken up in the middle of the night, the pain toke more than one month to decrease after that i started to have pain to my ankles, elbows and wrists symmetrically but my hands results the most affected, an endoscopy to my hands reveal severe inflammation to my tendons, and damage to the cartilages and synovial fluid on my hands and ankles, recently I had gum infection and the general symptoms went worse, however i am still in the position to control it with painkillers and some pred, i hope it remain mild, it is starting to affect my toes and feel a lot pain under my nails, waiting to see a rheumatologist but little agaist to start treatment with any medicine that inhibit the immune system
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Date: 02.11.2011
From: Keyleigh

Subject: Re: psoriatic arthritis i am new to this forum

Forgot to mention I also have PA in my jaw :-( had an operation on it 6 weeks ago but unfortunately it has not made a difference and still struggle to eat! x
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Date: 17.11.2011
From: Nat

Subject: Re: psoriatic arthritis i am new to this forum

Hey guys! I'm new here but been meaning to get involved for a while. I'm Nat, I'm 24 and got diagnosed with psoriatic arthritis about 2 years ago (although i have actually had it since i was about 17). Thought i'd join up here as you guys actually know what it feels like to have this condition and i guess i thought you may also be able to answer some of my questions :)
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Date: 18.11.2011
From: Dilizjo

Subject: Re: psoriatic arthritis i am new to this forum

Hiya and welcome to the forum Nat, I am sure your questions will be answered from the heart:)
Take care xx
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Date: 24.11.2011
From: 68mandie

Subject: Re: psoriatic arthritis i am new to this forum

Hi i am new to the forum, i do not have the condition but my 17 year old son is currently being diagnosed, although they cannot decide between ankylosing spondilitus and psoriatic arthritis, he has had back pain for several years but we assusmed it was growing pains as it was on and off, but had a bumpin the car in january and now he is in pain continually in his back and the last few weeks in knees, he has had numerous blood tests and 3 mri scans, told it was as but after seeing the consultant yesterday they have now mentioned PA, he has had an x ray yesterday and we have been given the leaflets on methatrexate to look over as they expect him to go on this in december, i am very nervous for him due to all the side affects and his age etc,
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Date: 14.12.2011
From: Lindsey

Subject: Re: psoriatic arthritis i am new to this forum

hi everyone i have recently been diagnosed with PA. I am in chronic pain and am due to start meth??? on Monday am scared as i have heard many scary things about this drug.

Never heard of PA til now but it is so bad i can't see myself ever having a normal life again.

Lindy Lou
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Date: 07.01.2012
From: Debs67

Subject: Re: psoriatic arthritis i am new to this forum

Oh my word! At last! a site that i can relate to with people on it who are going through the same things as me!
I am 44 yrs of age, diagnosed with Pa or Ra - rheumy cant make her mind up and its been over two years now. I tried hydroxychloroquin and had a terrible reaction to it after ten weeks - i looked like a strawberry and itched like i dont know what lol! Nothing for 6 months then apart from painkillers, steroids and Naproxen. thank goodness for Tramadol is all i can say :-).
I am a nursery nurse and a single parent since my divorce so i am finding it hard to make ends meet.I try to struggle on at work in order to pay my rent and bills but the pain and tiredness is becoming too much recently as i dont think the sulfasalasine is working and neither does my GP.My liver function tests were abnormal so the rheumy wouldnt increase the dose of sulfa to see if that helped she told me to keep taking the predisalone instead. Now on 7mg a day and the inflamation and pain is still bad. I applied for DLA and received my letter saying i am entitled to NOTHING this week. I thought that was it but i will certainly appeal after reading everyones comments.
Its an awful disease isnt it! It affects my hands, feet, knees, SI joints and the achilles tendons on both ankles. the rheumy said not to worry as she would repair the tendons if they ruptured but my worry is financial. You just get on with it and cope with the pain and tiredness - i collapse and do nothing after work and at the weekends and if i do its very slowly! Its what i have to do to make sure i can work the following week to put a roof over mine and my girls head.
the benefit system is SOOOO confusing that i have given up apart from the DLA. i know that is bad but i havent got the energy to trudge through it all.
I am waiting for a new apptmt for my rheumy as i couldnt even pick up a biscuit last week, my daughter was looking after me...brushing my hair and sorting me out.I may as well have had flippers for all the use my hands were lol. i dont want her to become my carer when she should be concentrating on her education and going out and having a good time. Is there anyone else out there feeling like this? I know i am ranting but its nice to be able to rant and know someone will understand what you are going through.Sorry! x
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Date: 12.01.2012
From: Sharon

Subject: Re: psoriatic arthritis i am new to this forum

Hello All,
Please can I ask for some advice?
My Psoriatic Arthritis is very severe, I can walk 50 steps sometimes but then another time I cannot even put any weight on my feet as the pain is horrific in my feet, knees, hips and the bones inbetween. Is there any particular shoes anyone can suggest in order to enable me to have my 50 steps more often please? thank you very much, Sharon x
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Date: 21.01.2012
From: tricia

Subject: Re: psoriatic arthritis i am new to this forum

HI i never relized how much pain people would be in i was diagnosed 18 months ago i have tryed methotrexate lefludimide and another medication they have started me on a new one this morning just had a bad spell in hopspital find it hard to move hand just keep on thinking it has got to get better just got erebel lets hope this works thanks for listening good luck everyone
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Date: 07.02.2012
From: Cliff

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sharon
As for shoes, I have had some relief from wearing New Balance - Motion Control Walking Shoes with a podiatrist made in sole - however my symptoms sound a little easier - but hey they may help!
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Date: 07.02.2012
From: Mike

Subject: Re: psoriatic arthritis i am new to this forum

Hi, all I am new to this forum, I've been reading through allold post for the last few days, it is comforting hearing I am not alone with this. I am 27 and been having a terrible time for about 4months now, I have seen rheummy once already who suggested that I may have pa but not diagnosed. I am going back to see her on Friday I just hope I can get diagnosed so I can start receiving treatment. Do you think it's likely I may be diagnosed this early? I know for most of you it has taken alot longer. I am really worried about my hips they are so painful (groin area) X-rays showed cam deformity last time I went and they have got much worse. I'm scared I may have to have a hip replacement as I have read many of you have had one. I am only 27 I really want to play football again and so worried I won't be able to.
Thanks for listening to my rant/moan.
Mike
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Date: 14.02.2012
From: Jane

Subject: Re: psoriatic arthritis i am new to this forum

Hi, this is my first time on here. I was diagnosed with Psoriatic Arthritis last month and am now on week 4 of taking Sulfasalazine - but the tablets are giving me raging headaches. Has anyone else had this side effect and any suggestions for keeping them under control? Pain meds just aren't working!
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Date: 14.02.2012
From: Mike

Subject: Re: psoriatic arthritis i am new to this forum

Hi Jane, I was diagnosed with psoriatic arthritis last Friday. I have to go back to see rheumy nurse at the end of the month, I am going to be starting sulfasalazine hopefully it works better for me. Keep us up dated with how you get on. X
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Date: 21.02.2012
From: geraldine

Subject: Re: psoriatic arthritis i am new to this forum

Hi. I am from the Uk. I have had PA for about 5 years, first in my left ankle. I had to have an ankle fusion. I am on maximum 25mg Methotrexate which I inject once a week. I get on well with it and have no side effects. I suffer very badly with fatigue and I am not sure if this is the disease or the methotrexate. I now have it in right knuckle which is very painful and also right foot is affected but hopefully methotrexate will keep it at bay so I will not need another ankle fusion. I have tried leuflumenide (?) but upset me very badly. Sulphasazaline didnt help at all. PA is very debilitating and I dont have any energy at all.
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Date: 23.02.2012
From: Jane

Subject: Re: psoriatic arthritis i am new to this forum

Hi Mike, I'm still having really bad headaches but I have to say the tablets seem to be working on my painful joints. I have it in one of my toes joints and before taking the tablets every step was painful. But I've had four pain free days in a row this week - the joint is still swollen but it's ok to walk on. I'm seeing a nurse this afternoon about my blood tests - as when you start Sulfasalazine you have to go for fortnightly blood tests.
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Date: 23.02.2012
From: George

Subject: Re: psoriatic arthritis i am new to this forum

I have had psoriasis for 13 years, psoriatic arthritis for 6-7 yeras and myasthenia gravis (not sure when that started). What I have found out is that diet can really help. recently, in some research I was doing I found several books and video documentaries that claim an all raw vegan diet will help cure it. I will be attempting this and I will be blogging it. This is the link to the blog feel free to follow: http://rawgan.blogspot.com/
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Date: 18.03.2012
From: kate

Subject: Re: psoriatic arthritis i am new to this forum

hi there i was diagnosed with pa in 2008 when i was 25yrs old, took a very long time for them to diagnose it or even refer me from doctors. Had hip pain for years. I dont have psoriasis 10 years before a massive episode of it but havent had it since. I was put on sulphasylazine i have six tablets a day, took a long time to work but i cannot imagine life without them now, if i forget to take them i know about it, i also have diclofenac and sulphadol for when i have bad attacks, but since tx began i have only had two bad attacks which were so very painful. every day life now is ok, i am very achy all the time but before i was also late for work because i couldnt open my hands for a east an hour after waking, i had to phone work using a pencil in my mouth. I recently had a baby and i have to say my hands do ache all the time now along with my back but something i live with. sulph is worth a try and its not a steroid . Although blood tests are constant good to make sure ur liver it healthy. i just dread the future cant help think that in a few yrs i will be pretty useless.
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Date: 21.03.2012
From: Angus

Subject: Re: psoriatic arthritis i am new to this forum

Get your consultant to try inflixmab - made a huge difference to me
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Date: 03.04.2012
From: Colin

Subject: Re: psoriatic arthritis i am new to this forum

Hi,
Been on sulfasalazine,methotrexate,leflunomide and waiting to go on adalimumab - made redundant in Dec from a job I could just cope with after ten years, getting grief from job centre as I am limited to what I can do, some days a struggle to walk at all - feels like I have been kicked all over, Job centre want me to apply for DLA as then I don't have to attend, so they say, had problems with methotrexate after a year ended up in hospital with breathlessness/cough went on leflunomide and blood pressure shot up within a couple of weeks having read up on adalimumab am even more worried as "very rarely" it can cause cancer!
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Date: 03.04.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

Hi Colin you sound as though you have had your fair share of dmard drugs like myself, I had 5 dmard drugs then went onto enbrel now awaiting a delivery of humira and like you was very concerned before starting the anti tnf drugs about the side effects but after talking them over with my rhumy nurse she has helped maybe you should ask to have a word with your team and see what they say, I would defiantly try for dal it is a long process but it will be well worth it in the end and if you need help they you are surely entitled to it.
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Date: 04.04.2012
From: Colin

Subject: Re: psoriatic arthritis i am new to this forum

Thanks, I probably don't have much choice nobody is going to give me a job like this, I did wonder about about claiming DLA but with all the clampdowns I don't want to get it then have it taken away after I have started to rely on it.
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Date: 09.04.2012
From: Sean

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sadie
You asked about natural remedies - and it sounds from your post that you in are to self help.

You might be interested to read SCD diet (specific carbohydrate diet) - please also read DOGTORJ.com - there is so much information on changing your diet to solve the mystery of our conditions.

It bothers me that so few people on this site are aware of the potential of diet changes to help them - many posts and replies are either about the new drug they are trying or how ill they feel on the drugs.

Many conditions are linked and there is a common thread with arthritis, eczema (caused by wheat and dairy allergies) on to other conditions that arise from deficiencies caused by the same allergies and intolerances - epilepsy, MS, lupus, poly myalgia, hormone imbalance.

Hope is helps you!
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Date: 21.04.2012
From: Jason

Subject: Re: psoriatic arthritis i am new to this forum

Hi, I was diagnosed last year with PA and have gone through various forms of medication. Starting with Leflunomide and Naproxen, however I had no change for 6 months so they changed and increased my drugs. Now my daily/weekely course includes Leflunomide, Methotrexate, Naproxen, Omerprazole (Gastro), Tramadol, Metoclopramide (anti-sickness) and Folic Acid. Unfortunately I am on course 6 of the Methotrexate and I am sick for at least 2 days after, last week I also was laid up with a chest infection too so was taking Anti-biotics as well, I have never been so ill in my life! I am only 40 years old and now feel I want to ditch the drugs as they are making me so ill and my quality of life has gone. I have PA in Right Foot Toes, Left Foot Side and Top, Left Knee and Left Thumb, all are very swolen and uncomfortable, also making it difficult to walk. I would rather the pain than the sickness at the moment, is there a chance of this spreading further? and what is the Methotrexate actually doing? Thanks
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Date: 21.04.2012
From: Chris

Subject: Re: psoriatic arthritis i am new to this forum

Sounds like not much Jason :(

I feel for you mate. How bad is your psoriasis?

I think it's time to push your specialist for a biologic. I was started on Etanercept when the Mtx failed me, far superior drug in my experience.

Best of luck,
Chris
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Date: 22.04.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

Hi Jason I was just reading ur last post there and I know what your feeling I like you have pa I was diagnosed 2 years ago nearly and like you I feel like ditching all these drugs because I would rather be n pain than the sickness and feeling rotten, I have been through hydrocloruquine, sulphasalazine,methotrexate, lefloumide,gold injection, enbrel anti tnf then back to methotrexate and now waiting on humira, I feel sick and tired and pretty pissed off to be honest, so I know how you are feeling
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Date: 25.04.2012
From: Jason Priest

Subject: Re: psoriatic arthritis i am new to this forum

Thanks Lynn, I guess there's not a lot to look forward to then, disbabled or sick? I think I'm opting for the big D!

Thanks Chris, I dont really have bad psoriasis, just a small amount on back of head, so something to be grateful for I suppose.

Best of luck to the both of you too
JAY
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Date: 25.04.2012
From: Chris

Subject: Re: psoriatic arthritis i am new to this forum

I'm coming around to your way of thinking J.
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Date: 26.04.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

It really is a case of trial and error with all these drugs and what works for someone won't work for others I hope you get on to a better combo to help your pain it's no fun being down all the time and I know that feeling well.tc
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Date: 27.05.2012
From: Sherylx

Subject: Re: psoriatic arthritis i am new to this forum

Hi, i am new to this and was only diagnosed 3 days ago with PA, I had full psoriasis 5 years ago and have only had small patches here and there since but not very often. I have just turned 23 years old and I am supposed to begin my nursing degree in September. So far I have the PA in both hands and both wrists, my right shoulder, my right knee and both elbows. My rheumy consultant has advised that due to the quick progression of my PA, my best option to slow progression and preserve body function is methotrexate however I am worried about the side effects and just don't know what to do. He has also said that I may go on sulfasalazine to try first however that methotrexate would be the smartest choice. I am worried about how this will affect me and whether my body will be able to cope with the nursing course (mental health) but I am also worried about how the disease itself will affect me without the methotrexate. I have been constantly run down, aching sore, tired and had various infections for the last 18 months. I feel I just can't win either way.
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Date: 27.05.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

Sheryl I'm really sorry to hear that diagnosis I know wot ur going thru I have pa as well had it nearly. 2 years and it is hard I can't comment on how you will cope with the course or drugs as everyone is different I have been right through all the dmard drugs and even some of the newer biloigical drugs but have recently been told they are stopping all my treatment as they have affected my blood counts there is a lot of side effects but you may not get any and mxt is a great drug for helping pa if it gets working and folic acid should help with some of the side effects, stay positive I know that is easier said than done you will get there I was 33 when diagnosed with 3 young kids yes it was hard but that's just what life has thrown us if you need any more advice then feel free to ask this forum was a god send to me when I was first diagnosed.

Take care lynnrx
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Date: 30.05.2012
From: Sherylx

Subject: Re: psoriatic arthritis i am new to this forum

Thanks Lynn. Have you tried methotrexate then, how did you find it for you? Do you mind me asking are what they are going to do for you if they are stopping all treatment? I've read in some places that methotrexate affects fertility then in others that it doesn't, just so confused and don't know when i'll next see my rheumatologist. Hope you are well thanks for the reply xx
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Date: 01.06.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

Hi sheryl I have been on mxt twice the first time on its own and the second time along with enbrel anti tnf injection it was fine until I got to week 3 then everything went down hill from there I kept getting a sore throat so they stopped the treatment and gave me antibiotics then my bloods were becoming infected think it means it was affecting your bone marrow and the 2 Nd time it did the same and my WBC went really low and it still is low although I've been off treatments now for nearly 7 weeks, it can be a really effective drug if there are no side effects or your blood work stays the same but you are well monitored on it so if they spot any problems they get to them quick as for wots next for me I doubt there is anything..... I see my rhumy on the 20 th July I have been bed bound this last week and I am thinking of phoning my rhumy nurse but I am not allowed steroid injections as I've had too many lately so I'm wondering if there is any point, I have a busy busy month coming up and need to be more mobile than this.

I hope things work out for you keep me posted
Take care x
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Date: 11.06.2012
From: Sherylx

Subject: Re: psoriatic arthritis i am new to this forum

Hi Lynnr,

Thanks for replying. Sorry to hear that your having a bad time with it at the moment. Must be so frustrating having tried various meds already.

I began my methotrexate course today with my gp, i requested to skip the rheumy nurse appointment as there was a long waiting list so thankfully my rheumy agreed to allow me to be monitored at my health centre. Also have to take 5mg folic acid everyday except meth day.

Hope you are feeling a little better this week.xx
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Date: 12.06.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

That's great sheryl so glad you got it started and fingers crossed there will be no nasty side effects for you I feel rotten in agony from head to foot I phoned my rhumy nurse yesterday and my rhumy is off till Wednesday so she is gong to call me Wednesday afternoon I had a steroid couple of weeks ago but it's not done much

Let me know how you get on with the mxt and good luck x
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Date: 28.08.2012
From: Danny

Subject: Re: psoriatic arthritis i am new to this forum

Hi folks
Here is my story;
About 2.5 years ago i developed psoriasis on my finger tips. It cleared up after a year or so although i still get occassional cuts on one or two fingers from time to time. On a recent follow up appointment (June) with the doctor i happened to mention that in the mornings i had stiffness on the inside of my arms, back of legs etc and he immediately diagnosed PsA. I have been on Meloxicam for last couple of months but no improvement. I am awaiting appointment with Rheumatologist and hopefully get something stronger. The mornings are worse..when i wake up i feel my body has seized up and find it difficult to get out of bed. Back of legs/thighs, shoulders, back, neck,are painful and stiff. I feel i need a doze of WD40! I spend 20-30 minutes doing some stretching exercises just to be able to move. Tying shoe laces, putting on socks etc are all very difficult and painful. I have started going to gym every/most mornings and find that swimming, sauna and jacuzzi help my mobility and pain relief during the day. I also do cardio vascular exercises and light weights.
I have read many peoples stories on this forum and i consider myself relatively fortunate that i have only recently developed PsA and not had it most of my life. I'm hoping that my rheumatologist will give me something that will work.
Has anyone else had any success from going to the gym?
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Date: 28.08.2012
From: Two hip replacements and still going!

Subject: Re: psoriatic arthritis i am new to this forum

Hi Danny, I don't go to the gym but I do the cross trainer at home and cycle. I've found that the exercise helps with my mobility. I've had RA for 17 years now and the medication I'm on seems to be controlling it well. Good luck with your rheumatologist I'm sure once you've got the right meds the morning stiffness should ease, I do still get it but once I'm up it seems to go.
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Date: 28.08.2012
From: Danny

Subject: Re: psoriatic arthritis i am new to this forum

Hi 'Two hip replacements and still going strong'

Thanks for the reply. I admire your strenght at coping with RA for 17 years.
The cross-trainer is one of the exercises i incorporate into my workout. I went to the gym this morning and although it is initially a struggle it definitely helps my mobility for the rest of the day. It seems ironic that my PsA may help me keep fit and help me lose weight!
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Date: 28.09.2012
From: Stephanie

Subject: Re: psoriatic arthritis i am new to this forum

hey everyone, im steffi - 25 have a lil boy just turned 2 and have had PA for about a year now been on sulfasalazine & arcoxia for about 8 months and have just started MTX now aswell (4 weeks ago) i have PA in my right ankle, both knees, hips, both hands & wrists and back.. so pretty much all over

i am still currently sore all the time and the tiredness is ridiculous feels like no one else really understands - untill i started reading through the posts here... im lucky in the sence im only back part time at work because my lil boy is young but i just feel like im struggling with everything at the moment and dont get much support from anyone other than my bf with our son because no one else seems to understand and i think half the time they think im talking crap about how i feel... however i do think that my bf finds it hard to understand how sore/tired etc i am aswell... i feel bad because im strugglinhg to do simple
stuff and im only 25 ...

sorry that was a bit of a rant there in my defence its my MTX day and i know tomoz im no doubt gonna feel yucky.. fingers crossed with some persistance that the mix of MTX, folic acid, sulfasalazine & arcoxia will help some .. hope you are all well and feeling some impovement from your meds!
<3 xx
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Date: 28.09.2012
From: Lynnr

Subject: Re: psoriatic arthritis i am new to this forum

Hi Stephanie welcome to the forum I'm glad you found it this has helped me loads, I have psoriatic arthritis I feel for you at 25 I was 33 when I was diagnosed with 3 young kids, that was 2 and half years ago and like you tried a lot of drugs and felt yucky, I would say the last 10 weeks I have felt the best I have since my diagnosis it does take a long time to get on the right cocktail of drugs I have been on mxt 3 times the last time was 4 weeks ago and taken off it again it affects my WBC I tried enbrel anti tnf and now I'm on humira which has helped me greatly, I hope you get your pain under control soon as I know how your feeling.
Take care
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Date: 24.10.2012
From: shan

Subject: Re: psoriatic arthritis i am new to this forum

hi everyone,i have had athritis for a few years now, in december 2011 the psoriasis started, my hands were discusting, then my fingers started to get swollen bent, and really sore so i went to see dermo at hospital. she gave me acetrin which helped clear hands up but the psoriasis on my body and scalp got worse.the day i went to the hospital i could hardly walk because i hurt so bad in my hips ankles knees nearly everywhere, somebody told me about cider vinegar for athritis so i bought a bottle. i started taking about 2 tablespoons in water every day and for a few days the aching was still bad then it stopped. i have been pain free for 10months now. my hands are still a mess and my fingers bent and nails pitted. i went to see rhumatlogist this week and after x rays she told me i have ankylising spondilitus and psoriatic athritis and wanted me to start taking methotrexate. i have decided to wait and see if it gets a lot worse before starting treatment as the side effects seem awful.although the psoriasis is still bad i am not in constant pain in all my joints. i still take cider vinegar everyday. it works for me.
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Date: 14.11.2012
From: Paula

Subject: Re: psoriatic arthritis i am new to this forum

Hi everyone, I got psoriasis at 18 and was subsequently diagnosed with PA in 2003 some 10 years later. It started off in my right toes and has spread to other parts of my body over the years. I was initially prescribed a drug called Arava along with Diclofenac. After a couple of years the Arava ceased to be effective and so I was put on 20mg of Mexotrexate weekly. I have been on Meotrexate for quite a number of years now however my arthritis has got progressively worse and I am now under consideration for Etancertp. Most of joints are now arthritic even though I am only 38. I don't know how people manage to look after kids with this arthritis because I know how tiring it can be. I would be interested to know if anyone has ever been on Etanercept. I have also had cortisone injections in my finger and ankle.
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Date: 17.11.2012
From: barbara

Subject: Re: psoriatic arthritis i am new to this forum

hi im new to this forum.my name is barbarahave psoriatic arthertis.since 2010 im on strong meds with regular blood tests. recently put claim in for disabilty liveing allowance heard today turned down.im so upset.reason need this as trying to exchange my flat with other council tenant.as im under 60 yrs old the houseing told me until im in receipt of disabilty allowance they will not grant this exchange.place the tenant im trying to exchange with told me thier are other tenants under 60 they no disabilty.i really need this exchange as it be nearer to my family/friends who help me.im also upset as had help from community law they wrote my dla form fr me i have copy of it.when i rang disabilty dept was told what is put in application form is what they decedie on.ive checked my copy and very little is on form saying how arthertis effects me.person who helped do my form said dla doesnt need much put on form but reading this site others messages wish had filled it in myself as told persondoing my form to put more info in.im not doing this dla for money just need them to accept my claim so then i can move.ive rang houseing asking them to reconsider and grant this exchange but get told its legal and that i need to be on dla fr the exchange to be granted.im also writing to head councilor fr houseing fr her to help me and my local mp is ringing houseing mon fr me.i put in medical form to houseing.im not doing dla fr money its to move which will benefit my health big time.im very upset as person who done my dla form fr me only put very little on form.been advised to now await letter from dla saying its been declined and put letter in with supporting letters from my helpers and am awaiting my consultant arthertis clinic for his report as he hasnt done it yet.doctor didnt do a proper report at all the admin just printed of paperwork from each visit ive to doctors.ive booked appt see my doctor who said do letter.please can anyone help.also houseing says in tenancy no dogs in flats but yet i see loads of tenants with dogs in flats.so why cant they just grant permission im not asking much.im awaiting friend help do long letter stateing how arthertis effects me and help i reacive my sister cooks all my meals as i cant grip well plus to painfull many occassions burnt myself so now my sister does cooking friends help me in out bath help shoe lases etc.so sorry ive gone on and on i need to get it out of my system and know others on this site will understand.also need advise on work ive been on works fr apx 3 months as job requires lifting.cleaning duties etc.im worried theyll sack me then be left with not able to get any benefits.i need help on both issues.is anyone out thier to help me.most important at moment is to get dla to accept my claim.do you think if i put in letter to dla that i dont want money just need to be rewarded dla or is that a bad move.now await see if any of you can lp me thanks.sorry forgot say flat im trying to exchange with is classed as sheltered and as im aged 41 yrs old you have to be 60 yrs +.and flat im trying to exchange has tenants under 60 with no disabiltys.ive told houseing this but get tolddue to data protection cannot disscuss thier readons fr being thier.and ive been of work fr apx 3 months due to my arthertis.does anyone know if i get of work with ill health or will they sack me.thanks fr everyone reading this really hope get some answers from this forum.
you.
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Date: 18.11.2012
From: Lynn

Subject: Re: psoriatic arthritis i am new to this forum

Hi Barbra I have psoriatic arhtritis and fibromyalgia I sent away for it and first got turned down I phoned them up and asked them for a reconsideration and they then awarded me high mobility and low care so don't lose hope but it can take a few weeks for them to tell you but if you do get it it will be backdated to your original date so don't give up your entitled to it.
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Date: 18.11.2012
From: Nikki George

Subject: Re: psoriatic arthritis i am new to this forum

Dear all,
Like all of you on here I've had psoriasis since I was 6-7, I'm 35 now and got diagnosed with PA 18 months ago and it the treatment off thinking it would be ok and I'd put up with it. Now I'm back at the hospital and begging. MTX for me on a Tuesday followed by Follic acid on Thursday.
The moral of the story is sort it out sooner rather than later.
I now struggle to pick up my 1 year old daughter, play football with my 3 year old son, get up off the floor, open a jar, wave goodbye to folk and press the power on a plug socket.
after being sporty all my life and teaching martial arts for 12 years, having the basic things taken away from you is soul destroying, I feel less of a man. I currently work up telecom towers replacing antennas and think my time doing that is coming to an end.
It's interesting to hear people talking about disability etc.
anyway best of luck to you all xxxx
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Date: 19.11.2012
From: Nikki George

Subject: Re: psoriatic arthritis i am new to this forum

I too am on the same dose and know exactly how you feel referring pain, it's indescribable.
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Date: 25.11.2012
From: Colin

Subject: Re: psoriatic arthritis i am new to this forum

Ref DLA - I was made redundant last year and managed to get a temp to permanent job whilst waiting to go Humira, was in a bad way I'll admit but they carried on interviewing, I did not know, anyway went on Humira and was fine, felt 10 years younger, only to be told that they had jumped the gun and although my work was fine they had not thought I could cope long term and had not realised how much difference the new medication would make, anyway back on the dole and the Humira has stopped helping, nurse thinks it might be stress, now back to square one, disability advisor no help, they have no funds for training, thinking of applying for DLA but Rheumatologist keeps saying the next treatment might work, so I don't know if he will support a claim, my question is did all the successful claims have backing of their specialist?, he admits that in his opinion at the moment I am bad enough.
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Date: 25.11.2012
From: Lynn

Subject: Re: psoriatic arthritis i am new to this forum

Hi Colin I am sorry to hear your problems regarding the dla I think you should defiantly apply if they feel the need they will contact your rheumatology dept and he will tell them of your problems so should help I think they go to your gp as well it is worth a shot I am like you I have tried about 7 drugs to date including 2 anti TNf treatments and I get high rate mobility and low care and I have just sent in my renewal as it runs out in march I am hoping to get the care part increased as I am more dependant than I ever was and my disease Is still very much active hope this helps and let us know how you get on.

Lynn
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Date: 25.11.2012
From: Colin

Subject: Re: psoriatic arthritis i am new to this forum

Thanks.
Just feeling bad at the moment, honestly don't know what job I could do? the disability advisor at the Jobcentre was the proverbial chocolate teapot.
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Date: 25.11.2012
From: Lynn

Subject: Re: psoriatic arthritis i am new to this forum

I am the same i had to stop work last year at 36 and always think about getting back to work but wonder who will ever employ me??? It's not easy.
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Date: 25.11.2012
From: Josee

Subject: Re: psoriatic arthritis i am new to this forum

Hi I've been on the Anti TNF for quite a few years & it makes a real difference to both the skin & joints.
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Date: 22.12.2012
From: arlene

Subject: Re: psoriatic arthritis i am new to this forum

I am 53yrs and have been diagnosed as psoriatic arthritis.

I work full time, my pain at the moment is mainly hands, shoulders and feet. I get tired very easily, have headaches (I also have two small dips in my head just in the hairline has anyone else got that?) I have been very emotional recently, Cant concentrate sometimes feeling really low. I have felt frightened recently of the future.Simple daily chores have taken it out of me i.e. shopping carry shopping bags. Im on sulphasalasine, Plaquenil and arcoxia. Rheumatology are now wanting to introduce methotrexate. Im also frightened of being on all these drugs even although I am a smoker and like to have a drink with friends. Have been interested seeing all the comments on here. I just want to carry on working and have a normal life. I know this is selfish as there are people worse off than me. But has been better reading things on here and realising that other people feel the same way.
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Date: 22.12.2012
From: rhona

Subject: Re: psoriatic arthritis i am new to this forum

Hi Arlene, I have rheumatoid arthritis which i believe is similar to p/a. I can relate to a lot of the symtoms and feelings that you are experiencing. I am also on sulph and plaquenil and mtx. They can sometimes take a few months to work. I wouldn't worry too much about starting the mtx as you will have regular blood checks and that would show any problems up, i have been on mtx for around 8 years i think and so far it hasn't caused any probs.

Have you recently been diagnosed with p/a? It can take a wee while to get the right combination of drugs before you feel better and it is frightening but you will feel better.

You can still have a couple of drinks a week while on mtx but if you have a lot more then you would maybe have to get another drug. I was a smoker too and the funny thing is when i started the plaquenil i would feel sick every time i had a ciggie and i stopped about a month after starting it. They do say there is a link with smoking and r/a not sure about p/a.

Try and not worry too much, worry makes it all the worse. I hope you feel better soon.

Take care and let us know how you get on.
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Date: 28.12.2012
From: Denise d

Subject: Re: psoriatic arthritis i am new to this forum

Hi all was just looking through this forum and it looks quite useful. I was diagnosed with pa in April 2009 I ended up going private to see a rheumatologist as NHS waiting list was too long and I could barely walk at the time he diagnosed me the same day with pa and advised my doc to start me on DMD drug sulfasalazine all joints were affected . I was off work for 10 months I had terrible side affects to begin with rash severe sickness etc. a few months later I had to also go on methotrexate along with frolic acid, amitriptilyne, naproxen, omeprazole, and also paracetemol. Nov 2011 I started to get worse again and saw rhm in march he gave me corrosion injections and upped my mtx. I'm really struggling at times now especially with knees and shoulders and recently had more injections and acupuncture. I'm wondering if any1 can help with foods that can trigger as I find that tomatoes do so have stopped them. Do dairy products make it worse? also I was reading u can claim dla is this right as some days I can barely move.
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Date: 29.12.2012
From: Ariek

Subject: Re:Enbrel @ Humira and tooth infections

Hi,

I was diagnosed with PA about 30 years ago. I was treated with Remicade. Them Enbrel. Then Humira. I had to stop the last one due to severe gam infections.

Finally my dentist had to replace 5 tooth.

Do you have any proved information that Enbrel or Humira cause gam and dental infections?

My Dr. says that there is no connection at all between the two, and keeps telling me to go back to Humira.

Thanks.
Ariek
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Date: 29.12.2012
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

You mmight get better responses if you begin a new topic. Go to the top of the page click new topic and rewrite your message. Take Care
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Date: 06.01.2013
From: Tammy

Subject: Re: psoriatic arthritis i am new to this forum

Hi everyone, I haven't had a diagnosis yet, but would be grateful for ur opinion, I have had psoriasis for 19 years now, since I was 11. I started about 4 years ago with what docs thought was plantifacititis, very painful! This went after about 2 years, but also had sciatica again on and off for same peroid, lots of neck problems too. I didn't for one minute connect it with my psoriasis until about a year ago when my toes became very painful, achy and rigid, one toe in particular and the pads of my feet under my toes became impossible to walk on, burning and swollen, then A lump on the back of the other heel, also very painful which an x-ray confirmed was bone. My brother has been diagnosed with pa and had the same symptoms but took 5 years to diagnose. I'm having steroid injections to help with the pain but the doc doesn't seem to be pushing for a diagnosis even though he had said I have imflamtion in the joints. Does this sound like pa to any of you? I feel like I'm going mad with the pain and I just can't walk properly! Really getting me down I just want to know what it is. :-( thanks in advance Tammy
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Date: 07.01.2013
From: vicki

Subject: Re: psoriatic arthritis i am new to this forum

Hi i am looking for ANY advice or help anyone can give me, it will all be greatly appreciated
at the start of November 2012 my partner found out he had Psoriatic Arthritis(a pretty severe case) and he had to have 8 weeks off from his full time job-he was only entitled to 8 weeks as he only started his job in October 2011, and he's gone back to work this morning a wreck as he knows he's not well enough to go back!
He would stay off work longer but what would we do for money?
What would we be best doing as we have no idea what he would be entitled to benefits wise?

i am so scared and i don't know what to do incase we are penalised
MANY thanks
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Date: 07.01.2013
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi Vicki, make your self an appoinment with citizens advice bureau. There is help out there. I am so sorry your husband has returned to work when he still feels so ill.
There are sickness benefits to be had also DLA. It is hard when you are not aware what the system has to offer. I hope you get some help soon.
Keep your chin up and best wishes to your husband.
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Date: 23.01.2013
From: Joanne

Subject: Re: psoriatic arthritis i am new to this forum

Hi everyone...

I don't know what to say really. I am a 29 year old woman and I have just recently been diagnosed with psoriatic arthritis. For 4 years i have had swollen and painful knees, one impaticular leaving restrictive movement. The bottom of my spine/back is painful when moving and had psoriasis for at least 5/6 years now. I have had constant tests for the last 4 years since my knee became swollen with them now making the connection between the pain and the psoriasis. It has flooded my body since having my 1 year old. Its seems to get worse every week and the stiffness/pain etc was hard to bare with a little one. My hands are always sore and the psoriasis is particularly bad on my hands and back. The thing is, when looking at forums like here for example mines doesn't seem to be as severe as other people. My walking only becomes very painful if I walk for some time I find my back worse than my feet. In comparison to other peoples....do I have PA?? I would love peoples opinion on this as I don't know anyone with the condition, my GP/Hospital Consultant are in agreement and on my next appointment at the end of the month, medication will be discussed. Should I get another opinion or is this similar to anyone elses experience? Even the beginning of there PA journey (can't think of another term for it, sorry). I can't see any other people to talk to and you all seem very approachable and possibly could give me better advice on your conditions or experiences of your condition?
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Date: 23.01.2013
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi Joanne, welcome it might be better if you went to the top of the page and clicked new topic.I am sure you will get lots of replies, it is just that this is on an old topic and your new post might get missed by lots of us.
There are lots on here that will have lots of advice. I don't have PA I have OA so I can't really help. Try a new topic and I am sure lots will reply.
Take Care
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Date: 23.01.2013
From: Joanne

Subject: Re: psoriatic arthritis i am new to this forum

Thank you Marlene...Will copy and paste lol
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Date: 12.02.2013
From: Andrea

Subject: Re: psoriatic arthritis i am new to this forum

Hi I have PA have suffered for 3 years and has just got worse I take sulfasalazine and methotrexate have been on sulfasalazine for 2 years and the methotrexate for a year even though the blood tests say it is keeping the inflammation at bay I am still in agony it got so bad over the last year that I cannot work. I applied for DLA and was refused twice I am now appealing and due to go to a tribunal in march has anyone else experienced this or can anyone give me any advice, as it is really stressing me out.
Thanx x
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Date: 24.02.2013
From: lyuzita

Subject: Re: psoriatic arthritis i am new to this forum

Joanne
I have been saffering with p for more than 20 years

Look for right dieta Please
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Date: 24.02.2013
From: Jason

Subject: Re: psoriatic arthritis i am new to this forum

Hi

i was diagnosed with Psa three years ago, I have had all the tests, blood, xrays, mri etc etc...

i started mtx and sulphasalazine, to no avail. I am now on Humira injesction every two weeks. I still take naproxen, lansoprazole and solpadol for the pain and inflammation. I feel tired and washed out all the time and yes the chest pain is unbearable at times. My eye sight is getting worse, and I now wear hearing aids just to add to my problems.

All I can say is dont give up, fight it and smile. even though at times you fight to keep the tears back. We are in it together.


take care

J
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Date: 24.02.2013
From: Jas

Subject: Re: psoriatic arthritis i am new to this forum

hi

make sure that they have a definative lsit of all your medication, amounts that you take etc, these need to be what u have had and are having. Also give them permission to see notes and report from hospital re your condition. This all helps. Also see the citizens advice bureau for any further info as they have people that have helped others with forms etc etc..
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Date: 25.02.2013
From: lyuzita

Subject: Re: psoriatic arthritis i am new to this forum

write to me if you are interested
http://www.facebook.com/matushka.zemlja
http://sheringhamski.weebly.com/

Thanks
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Date: 02.03.2013
From: lyuzita

Subject: Re: psoriatic arthritis i am new to this forum

if you are interesyed in my method write to me
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Date: 02.04.2013
From: Philip Dearden

Subject: Re: psoriatic arthritis i am new to this forum

Hi every
One i am new to this site I was told by my doctor that I have got pa I told him about my symptoms sore joints excetra he looked at some dry skin on my elbows and diagnosed pa.
This time last year I was swimming bike riding and walking now it seems that I am tired all the time and when I get up in the morning I ache all over.
He never gave me any medication he said just take pain killers. I think this seems to be gettin worse could someone tell me if there is a cure or will this slowly get worse.
I must say that I have never had any noticeable symptoms of psoriasis in my life before and I am 51 years old
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Date: 02.04.2013
From: rhona

Subject: Re: psoriatic arthritis i am new to this forum

Hi Philip,

If your doctor thinks that you have pa then he should refer you to a rheumatologist. If you have pa then it is important that you get the right treamment for it and only a rheumatologist can prescribe the right medication for you. Go back to your doctor and ask for a referral and if you get on the right medication then you should feel a lot better. I have r/a and there are similarities with it and pa. but it really is important that you get a referral asap.
Good luck.
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Date: 03.04.2013
From: rhona

Subject: Re: psoriatic arthritis i am new to this forum

Meant to say, Welcome to the site Philip.
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Date: 08.04.2013
From: IONA

Subject: Re: psoriatic arthritis i am new to this forum

Hi, I took my 13yr old son to the Dr this morning and she thinks he may have psoriatic arthritis, he is now waiting for appointment with the rheumatologist, i am looking for as much info on psoriatic arthritis if anyone can help.
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Date: 17.04.2013
From: Jenny

Subject: Re: psoriatic arthritis i am new to this forum

Hi all i have been on methotexate for 7 years i can now walk but still have a few pains.
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Date: 29.04.2013
From: Philip

Subject: Re: psoriatic arthritis i am new to this forum

Thanks rhona for your input I will go back to my docs and get a referral and see what they say
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Date: 01.06.2013
From: Carrie

Subject: Re: psoriatic arthritis i am new to this forum

I have had psoriatic arthritis for about ten years,I am 46,and my 26 year old son has been recently diagnosed with a.s which he inherited from me. We both have changed our diets and don't eat red meat or inflammatory foods. I also have fibromyalgia and have been on lots of different meds. I am now on targinact for the pain as tramadol made me badly constipated and I have ibs as do many people with fibro and arthritis. The main thing that has helped me is yoga and gentle exercise such as swimming and walking. I have gone from being in a wheelchair four years ago and walking with a stick to not having to use a stick at the moment. I do get very very fatigued as does my son,and think the body fighting the inflammation all the time makes you so tired. I just wanted to say sometimes you can get better,I never thought I would and was so ill for five years but to be honest since I have looked at diet change,lost 2 stone,and used supplements and exercise I have gradually improved,also acupuncture really helped me. I have also got a very supportive family which really helps. My best wishes to everyone on the forum.
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Date: 06.06.2013
From: jaime Collins

Subject: Re: psoriatic arthritis i am new to this forum

Have you considered Cold Laser Therapy? Cold Laser therapy is amazing for chronic Arthritis and spinal conditions!!!

FDA approved for pain relief and reducing inflammation. Safe and convenient to use in the comfort of your home. I am happy to supply information regarding purchase of the safe over the counter laser for use at home.

I have worked first hand on some unbelievable conditions and had lots of success with pain management.
www.soundnesssolutions.com
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Date: 06.06.2013
From: Louise

Subject: Re: psoriatic arthritis i am new to this forum

Hello everyone. Another newbie here!

I'm Louise. I'm 31 and been diagnosed with PA a few weeks ago.

I had psoriasis on my scalp only from about age 14-15 a 50p sized patch would come and go. That is until a few years ago. It got really bad. All over my scalp and didn't go away. I had to start putting treatments on it and I started buying and using cloth hats at work instead of disposables they provided. This helped with the itching and heat to my head making the psoriasis worse. Even more so because I couldn't itch it when sterile!

I'm an operating theatre nurse scrubbing alongside surgeons handling their sterile instruments.

Have you clicked yet? Yes... I have it in my hand. The psoriatic arthritis. And my foot. I stand most of the day every day and I wear two pairs of tight latex-type gloves at once when I am scrubbed up.

Last year I took up rock climbing with a friend. My big toe on left foot would hurt off and on and I'd struggle to put all my weight on it on a rock face. Sometimes fine. Other days sore. Then in December my big toe and 2nd toe begun to be sore all the time. And now it's spread to most of my left toes and joints at that end of the foot. I've walked with a hobble since December, so 6 months now. I'm only 4ft 11" and unable to wear heels of any description. I feel even shorter stumpier and uglier when dressed up with my friends. Who were always taller and more pretty anyway. I'm only 31...

Im right handed. My right middle finger got big and sore early last year and it was like that for four weeks when I asked an orthopaedic registrar (junior trainee surgeon) about it at work and he thought it could be broken and told me to get to a+e. I didn't. I just thought silly me! I'd been stretching it daily thinking it was staved etc and just thought I'd just rest it more and stop the stretching. And it did go away. That was that but then 6 months later it flared again but just for a week then the next flare lasted a few days. Then come February it flared to gigantasaur sized and was agony to even move it a mm ant direction. It stayed big but not so sore and it's been such way since. That's 4 months now. Makes work really difficult and painful. I drop instruments some times. I've had to change the way I hand things over to them. You're meant to hand them the way the surgeon will they will Use it so they don't need to turn it etc. sometimes I can't. You guys can imagine how stiff and sore PA joints get - well imagine the wearing two pairs right gloves on top - it's even less bendy.

Had X-ray of foot - normal. Then podiatrist said it was capsulitis and gave me shoe insoles. They were painful but I persisted for weeks til I got the ultrasound she referred me for and it was normal. The insoles still hurt and were stinking bad so I stopped wearing them. I got referred to the ortho surgeons I work with. My speciality as a theatre nurse is orthopaedics. Bones joints tendons. Is that ironic?

Then of course finger started. Got X-ray - normal. Then when on night shifts myself and colleagues had a good google said started thinking they were related the finger and the foot. We found PA and the finger pics looked like mine. Went back to docs again and she googled it too and referred me to rheum.

Lucky coz I work as a nurse they got me straight in the following week before their day started. There's at least the odd benefit from being NHS nurse. The way they see it is get staff seen early before they end up off sick with it. So they benefit too. Glad though as when seen the rheum team they said there's normally a 4 month waiting list and I'm already severe - so rheum consultant told me.

Rheum immediately diagnosed PA. on just looking at me. Then she felt all my joints. Told me my ring finger on right had was next and also that my pointing and middle finger on left hand would go at some stage.

I got shot in the ass with two vials of steroids. Given a GP letter to start me on 12.5 of methotrexate and folio acid once a week. I've now done two weeks on the meths. First week I got sore eyes and conjunctivitis and had to get special lotions for it as the usual you can't use with meths. Also both weeks ice got nausea on and off for couple days after. Last time I was dry heaving in a toilet at work. I also then get after the nausea is gone - dodgy tun with pain, feeling ill and some more frequent trips to the toilet and diarrhoea. I've lost 2lbs in the month now. I was a,ready trying to lose weight and lost 12lbs in last few months. But recently I've not been eating well, exercising or trying to lose weight and its coming off still. I'm still about half stone til my target weight so not altogether complaining as yet.

Pain meds I'm on are 30/500 co-codamols and 50 of diclofenac.

They don't touch the pain. The GPs I've seen which seems to be most of my practice this year do not want to prescribe me anything stronger. The fact that the docs had to google PA makes me feel they don't actually know or understand this condition or just how painful it is. Let alone working standing all day and getting my fingers squeezed in two pairs of gloves several times a day for hours at a time.

Sorry this is long. Nobody else to talk to. I do talk to colleagues at work. Not fully. i try stay upbeat. Put brave face on but I cry a lot at home. The colleagues are nice though, let me scrub for what I want. Let me not scrub for first case of day when fingers are worst. The orthopaedic consultants are finding out slowly as I am Informing them. They are being nice too. Telling me they'll look after me. But I'm not naive enough to think ill still be in this job I love come retirement age.

A week after rheum diagnosis that ring finger she said was next begun being sore. Today I woke and not only sore but now - getting stiff. If it gets like the middle finger - only bending 50% on a good day and %75 on rare great day and 10-25% on bad days I don't know how I'll manage to work.

I have a boyfriend though he doesn't live with myself and my 9 year old son at the moment. We having issues pre all this diagnosis. He says he isn't going anywhere but he also doesn't understand the pain. The sadness I feel. The constant exhaustion. Working full time where the pain is worse and iob can be stressful, and having a kid and house to keep.

Sometimes on my days off I cry and cry and cry and struggle to get P of bed, as I just think what's the point. I will just be in pain all day. I know this is bad. I had antenatal depression and then postnatal depression with my son. I feel myself slipping down that road again and want to snap out of it. I want to try remain positive but tbh when I read forums or things on PA I just see bleakness. It's gonna get worse. It's already progressing so so fast,

Anyway thanks for listening/reading congrats if you managed to make it to the end. First blood tests for me tomorrow. Ill be even more upset if they come back bad and I have to come off the mtx.
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Date: 20.06.2013
From: Colin

Subject: Re: psoriatic arthritis i am new to this forum

Hi Louise
Sounds like the way mine progressed- for me Meth did not work for long, lost my job could hardly walk, but went onto biologics first Humira - all pain and swelling gone in a couple of weeks, but only lasted 6 months and slipped back, now on Enbrel took a bit longer to work but still pain free - there is hope but you need to try several of the "cheaper" treatments before they will try this.
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Date: 25.06.2013
From: laura

Subject: Re: psoriatic arthritis i am new to this forum

Hello all,
Been reading this with interest as I have just been diagnosed with PA myself. Im shocked and saddened by how quick this has taken over my life. This time last year I did one of those moonlight walk thingys and now Im struggling to hobble round the house :o(

Louise, I read your post with interest as I am a single mum too. I have a little boy of 3 and its alresdy impacting on the things i can do with him. Bless him, he doesnt understand why Im saying I can't give him piggy backs or why i cry out in pain when he accidently lays on my foot. My friends keep on at me to get a boyfriend but I just cant imagine why anyone would want to be with someone who cant get themselves out of bed in the morning let alone join in with 'bedroom aerobics'!!!!

I too am in a job I love (Teacher) but like so many of you here, it is making work really difficult. My whole days is spent on my feet doing up coats/leaning over to help children/picking their mess up off the floor (!!).

No-one else understands the pain Im in and my ex-husbands comments after my diagnosis were "oh well at least you havent got a bad one like rheumatoid artritis". Men...don't you just love them!!!

Sorry to post such a long winded message but at the moment iv got so much to say and so much to ask.

My journey has been as follows:

Oct - decorating my house and my thumb kept swelling up until i could barely use it. Also red hot.

Oct/Nov - continued random swelling of hands despite finishing the painting. Constantly exhausted
Blood tests at docs. All clear

Dec - 1st consultant at Ortho - took xrays/more bloods - no inflamation seen.

Dec-April - Swelling worsening in hands. On a bad day I couldnt turn taps, do buttons etc. Moved to feet. Back continually getting worse. Ultrasound on hands - no inflamation. What?!!! Told to take Vit D (anyone else?!)

April - Feet so much worse than hands. Feels like all the bad stuff from my body has settled in my feet. Can barely walk on them for first few hours of day. None of my shoes fit and theyre burning/throbbing/tingling. Even a slight tap on the skin has me rolling in agony

June - Various flare ups in hands/feet but also now knees and shoulders. Back extremely stiff throughout the day. Falling asleep even halfway thru reading stories with my boy ;o(

Appointment with consultant led to diagnosis
More blood tests for HLA (?) and MRI booked for next few weeks
Drugs to follow altho i have no idea what as they told me i have to wait for my GP (uh?)

What's slightly depressing is that iv recently moved to flat with a 93year old upstairs...not only is she up til way past 11pm but she scuttles around 3x the speed of me!!!

I am usually a very upbeat person and I do often make light of my condition to friends etc but nobody really seems to understand that some days it feels like iv broken both my feet!!!
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Date: 25.06.2013
From: laura

Subject: Re: psoriatic arthritis i am new to this forum

Me again...

I should have said...Im only 34 (I say only...when i was 20 i thought anyone over 25 was ancient!!)
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Date: 25.06.2013
From: Jan

Subject: Re: psoriatic arthritis i am new to this forum

I was diagnosed with pa been on mex for 3 weeks just no change as of yet but exhausted .took 4 years to get diagnosis dreadful pain in hands,feet ankles,lower back ,neck and shoulders
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Date: 05.08.2013
From: Abram

Subject: Re: psoriatic arthritis i am new to this forum

I had joint pains before the age of 6. I noticed scalp infection (dandruff),eye floaters and chronic left eye pain at age 20yrs. Just of recent, I notice 1 left submandibullar gland swelling, right neck node swelling and groin nodes. All the swelling are small and painless. I have also experienced mild joint pains on fingers and toes which disaapears after 30mins in morning. Could all this be symptoms of Psoriasis and PSA? Is it severe or mild?
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Date: 13.09.2013
From: pinkbean

Subject: Re: psoriatic arthritis i am new to this forum

Hi

my husband has PA and is really struggling, he has applied for DLA and has been turned down, he had a medical and has not been told it is going to a tribunal, he struggles to walk any distance and can't even take our wee boy to school, he has no quality of life and I feel so helpless, he is on no treatment just now as nothing was helping but is waiting to start injections, any advise re DLA would be appreciated
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Date: 15.09.2013
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi Pinkbean, big hello. Sorry to hear your husband is having such a rough time of it. Lets hope the injections work for him.
Can I suggest you start a new topic for your question. Go to the top of the page click on NEW TOPIC and then off you go. I am only saying this as your post could get missed.
I do hope someone will be able to help you both with advice where to go next with the claim.
It is a long road but hang in there best of luck with the claim. XX
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Date: 26.10.2013
From: Nicola robson

Subject: Re: psoriatic arthritis i am new to this forum

My hubby was diagnosed with PA 3 years ago, he has been on mxt for 3 years and injecting for 1 year he is now on mxt injections and embroil injections too. He is 34! Had to give up his profession as a mechanic and be office based. Will we be entitled to dla/mobility???
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Date: 09.02.2014
From: sam

Subject: Re: psoriatic arthritis i am new to this forum

Been diagnosed with psa over a year, been on sulfasalzine, bloods keep coming back normas as i do not have a lot of swelling, my rheumotologist is even doubting his own findings, psoraisis in my head is really bad, and pain from my neck down to my feet, can't walk or get out the bed without any help, has somebody had the same exp pls x
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Date: 09.02.2014
From: bsk

Subject: Re: psoriatic arthritis i am new to this forum

Sam, it might be an idea to start a new thread, you are more likely to get a response. I don't have PSA so can't help.
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Date: 08.07.2014
From: claudette simpson

Subject: Re: psoriatic arthritis i am new to this forum

hi i just been diagnose with pa and very glad now have you guys to talk to
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Date: 08.07.2014
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi Claudette, I am glad you have found us and sorry you have been diagnosed with PA.
Can I just say if you go to the top of the page and click start new topic you will get a better response from everyone as old posts sometimes get missed.
Glad you joined us take care x
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Date: 11.10.2014
From: David R

Subject: Re: psoriatic arthritis i am new to this forum

I have had symptoms since was early teens eg nail pitting, migrains and stiffness getting out of bed. After many trips to the Dr I was only diagnosed correctly when I was 40. My Dr's had fobbed me off as had the neurologist. She had told me I had Sjo...ens. But came back negative. When I said to her my migraines and pain could it be PSA. Her response was how stupid! I was then marked as a hypochondriac. Anyway my wrists began to swell and I had terrible pain in them. I saw a Dr who was new to the surgery. She recognised PSA and referred me. I have been Hospital once when Ankle swelled up. I thought I had broken it. I am on Humira. I was on Methotrexate as well but I got a severe infection earlier this year due to a bad diagnosis in both legs and was hospitalised. I now have a slight limp as a result. I have now lost my job. I have second interviews this week. I am concerned if they know my medical history. Most employers I have worked for have asked this. I feel that I am now unemployable at age 47. What can I do? I can walk, but if I walk to far without my stick I need to get a bus or taxi back as my legs literally become weak. Can a prospective employer refuse to take you on with PSA?
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Date: 13.10.2014
From: marlene

Subject: Re: psoriatic arthritis i am new to this forum

Hi David, many companies have things put in place for disabled workers. I would advise to always tell the truth about your health. There is no reason why a company would not employ you as long as the opening you are applying for is not going to have any adverse effect on you. If you don't tell them they would be more inclined to let you go than help you. In any interview you will have the option to state your case and explain why you will be an asset to the company.
Good luck!!!!!
Take care and chin up.
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Date: 24.10.2014
From: Hayley

Subject: Re: psoriatic arthritis i am new to this forum

Hi just reading up about pay as I might have it, I've had chronic palmoplantar pustulosis psoriasis for about 6months now and I'm in agony, I also have a stiff left elbow that I can't fully straighten my arm a stiff aching right wrist and pains in my knees also feel soo tired I'm going bk Tuesday to see the rheumatologist for results of my MRI scans could I have this? Thanks x
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Date: 03.11.2014
From: Paula

Subject: Re: psoriatic arthritis i am new to this forum

Hi all, this is my first it talking to anyone about this, I was told I had PA In February I'd never heard of this condition before, I was started on sulfzalin (sorry about the spelling ) but had to come off of it because I had a bad reaction on it and ended up in hospital with pancreatitis not good, I had to have scans and cat scan before I was started on methotrexate and folic acid, I've been on it for two weeks so far so good I think, has anyone else had bad head aches on methotrexate.i have always worked but have been off sick since July coz of the pain in my ankel wrist and back, I have applied for pip benifit is that ten right one to try for, my poor husband has been my hero as he has to help me dress and undress , wash my hair in the shower as I can't raise my arms above my head, bless him, sorry if I've waffled on a bit but I'm so glad I have found so lovely people tp talk to , tanks for liserning xxx
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Date: 23.06.2015
From: rachel

Subject: Re: psoriatic arthritis i am new to this forum

hi. ive been diagnosed with pa a few months ago but it took the 11 years to diagnose. now the new rhumy took one look at me and my twisted fingers and bulging joints and mris and he diagnosed it straight away. im on morphine, amitryptaline, morphine and naproxen and gabapentin to try and help with pains. due to the condition I have now got leabral tears in my hips, ankylosing spondylitis in my spine, I have five fused discs and all my small joints are effected and disfigured. the pain is most days unbarable so my husband has had to leave his good paid job to become my carer and help me with the littleones. im 33 I have 3 children and I use to be a taekwondo instructer once I left the army. now just 10 years on my weight has shot up thanks to the meds and some days im in a wheelchair due to the swellings. this is what happens when you don't get treated. u must excuse the typing spelling its my hands im having trouble with. the recent problem added to it is costocondritus in my ribs very painfull
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Date: 23.06.2015
From: Sean

Subject: Re: psoriatic arthritis i am new to this forum

Hi Rachel

So sorry to hear of all your problems. But good that you have shared your story :). Sounds as though you are coping with a lot at the moment.

I have AS - and my neck, back, hips and rib cage have been the main targets of my disease. I am 49 - and had AS starting in my late teens.

I would say of all of these the hips and ribs are the worse to cope with. I have memories of trying to sleep - and trying to gt comfortable without a pillow. But the neck and spine the hardest to relieve my symptoms.

My Dad has AS and his skin flares and he has had Psoraisis - I too used to but now very rarely get dermatitis like dryness on my legs / lower back legs and bum - my Dad has recently started his thumbs and shoulders affected.

There are strong genetic links between Psoriatic arthritis and ankylosing spondylitis.

Have you ever tried any alternative approaches or researched causes of diseases?

Have you ever seen the Kickas.org website?
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Date: 25.10.2015
From: Donna O'Sullivan

Subject: Re: psoriatic arthritis i am new to this forum

I am also new to this Forum I have had Psoriasis since I was 18 years old, however 2 years ago I was finally diagnosed with Psoriatic Arthritis over the last 2 years I have had a flare up in my knees where I could not bend and had difficulty getting up the stairs and had to have 1 month off work. I have been on Naproxen since diagnosis but have had another flare up in my ankles and was off work for 1 month I also presently have flare up in my neck which has resulted in constant pins and needles in my left hand and 2 numb fingers I am doing Physio exercises but it is taking time and it has been over 3 months now. I am also having to deal with extreme tiredness and find it very difficult to work 3 days as I have to sleep after work and on my day's off. I also have aches in my lower back and am going for an MRI scan to see if it is in my Spine.
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Date: 01.11.2015
From: Jan turner

Subject: Re: psoriatic arthritis i am new to this forum

Hi could someone tell me if pa affect the eyes please thankyou jan
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Date: 31.03.2016
From: Rufus

Subject: Paid arthritis survey

Hi,

I'm looking to recruit a few UK people to take part in a Psoriatic arthritis survey project. The project involves asking participants to proofread a very short document and then discuss it over the phone. It will probably take a mere 10 minutes. They will be paid approx. £25 for their time.

If you would like to take part, please contact me at rufus.flowen@gmail.com

Thanks very much,

Rufus
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Date: 31.03.2016
From: Lechu

Subject: Re: psoriatic arthritis i am new to this forum

Sorry to hear that you are going through a crucial condition. Be positive things will change with your medication..else go for some ayurvedic treatments. Best treatments with effective treatments are available in ayurveda offering complete recovery from arthritis.
You can see the blogs on your own to get further details.

http://www.superbeing.in/blog/how-eliminate-psoriatic-arthritis-through-ayurveda/

Get well soon
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Date: 01.04.2016
From: lois

Subject: Re: psoriatic arthritis i am new to this forum

PLEASE don't come on here trying to sell false hope to us.
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Date: 29.05.2016
From: Katie MacDonald

Subject: Re: psoriatic arthritis i am new to this forum

Hi everyone, I think I might be have this too. Heres me story...
November 2014 I had a bad cold and really felt wiped out, asi dont really do sick days I soldiered on at work, however noticed a lump below my ear. When I went home for christmas to uk (I work in italy and still struggle with the language) I went to the do s and he freaked out suggestng it might be cancer or nust an infection. Anyway he gave me some antibiotics and I took them for 2 weeks praying the lump would go thinking that this would be my last christmas. It was v. scary. Anyway the lump didnt go and when I went back to italy I went for a scan which diagnosed inflammed lymph nodes whic I keep getting told are nothing to worry about.
Fast forward the summer, I am having dry skin dry eyes thirst and pain in my plantur (feet).
Anyway about 1 month ago I went to the opticians in uk who said I was producing insufficient tear fluid. So went back when in italy to the docs azking if this might b related to the lump which is still there. She said no dont worry. Then I asked her about my dry scalp. She said I had psoriasis and that might have caused my swolen lymph nodes. Any way I was referred to a dermatologist who said I has psoriasis on 2 parts of my body my scalp and else where. I have been sent for a blood test too and waiting results. Also I still have foot pain from time to time and have noticed I get back and leg pain but dont know if its just stress. Im worried it might be psoriatic arthritis. Will they be able to tell that from a blood test? Anyway sorry for the story but thought id just put it out there to see if anyone has any similar experience.
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Date: 02.08.2016
From: Hells bells 39

Subject: Re: psoriatic arthritis i am new to this forum

I was diagnosed last year with pa I have taken methotrexate tabs then injections as thought they would lessen the sickness. I have never felt so ill in my life, no energy no appetite no interest in anything. The 2 days after injection I was so wiped out I barely got up or dressed I decided to cope with the pain till I see the consultant because I just could not cope with the meds. I'm in constant pain it's hell . I'm hoping to try a biological next. This disease is so debilitating it has affected my life so much . Is anyone actually successful at climbing DLA ? Good to talk to others who understand thanks .
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Date: 02.08.2016
From: lois

Subject: Re: psoriatic arthritis i am new to this forum

Hi there, firstly welcome to the forum. It is a hard disease that we all have. Being tired all the time is part and parcel of it all. Can I asked what pain medication you have? I have RA and am on meds for it but I have to take good pain meds as well.
There is no need for you to be in so much pain. Have you spoken to your rhumy nurse with regard to getting the pain under control?
I hope you get something sorted soon.

As for DLA get the forms and ask some one to help you fill them in. Maybe Citizens advice bureau. It is hard now to get a claim but if they say no you are entitled to appeal.

Good luck with all of it and let us know how you get on.
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Date: 13.09.2016
From: Kevin

Subject: Re: psoriatic arthritis i am new to this forum

hi all i was told i had P.A. around 4 or so years ago, ive gone through numerous meds etc including self administer injections/oral methatrexate etc........Is this illness classed as a disability and do i need to register with anyone or dept? im not interested in benefits or financial support. cheers all thanks
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Date: 17.09.2016
From: lucy

Subject: Re: psoriatic arthritis i am new to this forum

Hi Kevin, I think it depends how you feel, do you feel you have a disability? I have RA and some people can have it mild and not class themselves as disabled and others can barely walk. The only people you have to register with is the doctor or you wouldn't get your medicines but you don't have to register with anyone else.
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Date: 23.11.2016
From: Sarah

Subject: Re: psoriatic arthritis i am new to this forum

Hello I got diagnosed in July and am taking sulfasalazine and 4 months on there is still no improvement just more pain in my hands (which are now deformed) my knees (find it hard to walk and stand up) my feet, back and shoulders are all effected, I'm at a constant battle with my work of which I'm a nursery assistance and I'm struggling to keep my job at the moment as I'm struggling to even get out of bed with the morning as I feel like a 90 year old (I'm 30), I'm also type 1 diabetic and I'm struggling with my injections and checking my blood, does anyone know what my options are? If I leave my job can I claim benefits? Or can my work sack me for not being fit to work? I feel Abit stuck because I don't want to leave my job but feel I don't have a choice.
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Date: 27.11.2016
From: Karen

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sarah, sorry to hear you're struggling.
I've had PA for over 25 years, it took a long time for me to find the right meds and treatment. I started with sulphasalazine but it didn't work for me and the methotrexate did. Maybe go see your consultant and say how you feel see if there is something else out there for you.
In terms of work not my area of expertise, have you been asked to see an occupational health yet? Have you made work aware of your illness?
Benefits wise not sure of your options, you can claim PIP working or not, as for anything else I don't know.
Sorry I'm not of more help
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Date: 27.11.2016
From: lucy

Subject: Re: psoriatic arthritis i am new to this forum

Hi Sarah, My daughter is also type 1 diabetic and that alone is enough to deal with. I am sorry that you also have to deal with PA. I think you need to get in touch with the hospital and let them know that you are struggling as there is other things they can give you to help.

You should get the form and claim PIP, it might be advisable to get someone to advise on filling it in though. If you are unfit to work you could also claim benefits, i'm not too sure either what you would get but make some enquires or call the citizen advice.

Good luck and hope you feel better soon. xx
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Date: 01.12.2016
From: Dhawal

Subject: Re: psoriatic arthritis i am new to this forum

We are conducting a market research study on behalf of our client, a pharmaceutical company, and are looking to invite people who have been diagnosed by a physician as having Rheumatoid Arthritis and who would be willing to participate in a market research study about living with Rheumatoid Arthritis. The purpose is to understand your experience with rheumatoid arthritis. The research will be used to guide the development of a potential future treatment for RA.
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Date: 05.04.2017
From: Susan

Subject: Re: psoriatic arthritis i am new to this forum

I was diagnose with seronegative arthritis.My fingers were very bad, I find it hard to do normal everyday, I started having pain in my lower back in May 2010. I had X-rays taken at two different hospitals. I was told by both doctors that they canāt see anything wrong. But my back kept getting bad to worse. I took number of treatments, I didnāt get much better. And my legs started getting colder.Now i can't still believe my self really cured from the sickness, oh by this time last year I start feeling bad about my life, I feel pain everyday of my life am very happy now that am really cured I couldn't have do this on my own I wish is not God that help me with my helper I was searching the internet about this sickness last 3 month when I found about this great doctor Ighodalo, the man that keep his words I wrote the man email about my problem immediately I get a reply from him telling me the steps and necessary things i need to do, i was doubting at the first time if it will work out but when i decide to give it a try, i found my self getting much better and i was cured. Am really happy now with my family you can also get your self cured too from this sickness by contact him through his email: dr.ighodalocuringhome@gmail.com
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Date: 17.05.2017
From: MadisonK

Subject: Re: psoriatic arthritis i am new to this forum

Hi I'm suffering with psoriatic arthritis and psoriasis for some time now. Started humira a month ago and doing good so far. I've a friend who is on another forum - carenity, and she told me they are doing a survey on humira and other biologicsl drugs >I dont know all the names. I did it just to let them know that humira is helping me so far. So if you ar einterested here is the link to the survey. I took part, so it's a safe link. https://member.carenity.co.uk/surveyBymail/0/102/0/0. Anyway, are there any other people on humira here?
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Date: 08.06.2018
From: akshayv

Subject: Re: psoriatic arthritis i am new to this forum

I have heel pain and need arch support for my tired feet. I first wore them around the house for an hour or two at a time, as suggested. This past weekend I ventured out to work my daughters Girl Scout cookie booths. I was on my feet 2 hours straight and my feet felt great. orthofeet shoe really helps me do my job and cuts down on the pain I have once I am off my feet.
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