Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 02.06.2010
From: Curtis ratcliff

Subject: Recently diangnosed with Psoriatic Arthritis

Hi all I'm 28 an found out last week I have Psoriatic arthritis I am in so much pain on a daily basis it's crippleing all I can think about is how much I'm hurting every wakeing minute, iv got it bad in both feet my left knee and my back, I'm finding my daily life really hard as I have 2 year old son and I feel I am just leaving my girlfriend to do everything, I'm so deppressed at the moment and even the tramadol my doctor prescribed me don't take away the pain anymore, can someone please tell me this isn't going to be it for the rest of my life
reply | back to forum

Date: 02.06.2010
From: Sally

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Curtis, welcome to the forum. Are you under a Rheumatologist or have a specialist nurse? If not, ask your gp for a referral ASAP. If you have, maybe you should contact them and let them know how bad it is for you. I've been in your position and it is no joke. Now that you have been diagnosed you should be getting proper treatment. I don't have PA so am not sure if it is the same as for rheumatoid arthritis but maybe you can get a steroid injection to get you moving. Some of the peeps on here have more experience with PA than I do and perhaps they can help. It's not right that you are in so much pain.
take care.
xx
reply | back to forum

Date: 02.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi sally thanx for the reply yes I'm under a Rheumatologist and I recieved a steroid injection last wednesday and it did take a bit of the pain away but within 3 days I was back in total agony, it's no life bein in this much pain my work and home life are suffering so much, do you think I should ring the Rheumatologist back and explain how much I'm still hurting
reply | back to forum

Date: 02.06.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi curtis sorry to hear your in so much pain,I know exactly how you feel. When I have an injection (steroid) it usualy takes up to 5 or 6 days to kick in properly. But I think you should ring your rheummy like you said, he may be able to give some better advice, you cant carry on with that pain. But you realy need to sort out your pain meds or you just cannot function properly, give him a ring asap and let us know how you get on. take care.
reply | back to forum

Date: 02.06.2010
From: Sally

Subject: Re: Recently diangnosed with Psoriatic Arthritis

hi Curtis, Yes you should ring him. Are you on oral steroids? I have injections and oral ones and still having problems. Started Methotrexate in Jan and sort of working but not fully. I was in a really bad way last summer when they took me into hospital and pumped me full of steroids! The systemic one acted straight away that time but takes longer now. Sounds like you need your meds sorting out as Lynn says.
let us know how you get on.
xx
reply | back to forum

Date: 03.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

The only meds I'm on are hydroxychloroquine which I've been takeing for a week, I will litrally try anything to get rid of this pain it's controlling my life, just glad iv found this site were people understand the pain I'm in, my girlfriend tries bless her but don't think any will ever understand unless they have actually been through it
reply | back to forum

Date: 03.06.2010
From: connor

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hello Curtis,

I know how you are feeling mate. I'm a good deal older than you being 60 this year.

I've had Psoriasis along with Pustulosis, (Affects the hands & feet), on and off for about 36 years. In February 2009 Arthritis developed in my hands, lower spine and left knee.

It seems that it could take time and experimentation on the part of your Rheumatologist to find a medication or mix of medications that will help you.

I've been a self employed motor vehicle engineer, but have recently had to give it up because I just can't effectively use hand tools any more.

I know what you mean when you say that people don't realise how bad you feel. Some have said to me "Well you look ok.".....Yeah thanks..!

I've found that too much or too little physical activity aggravates the symptoms. The pain is not nice of course, but I also find the extreme fatique to be debilitating. Sometimes its an effort just to get out of bed in the morning, never mind trying to cope with the rest of a daily routine.

Next time you see your Rheumatologist don't be shy or mince your words, tell him straight that its not just discomfort, but Agony.

Best of luck, Connor.
reply | back to forum

Date: 03.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

You have hit the nail on the head there Connor that's exactly how I feel, sometimes I'm just so tired putting up with the extreme pain I just wanna stay in bed all day but I know if I do it will just make it worse, I'm a postal worker an iv obviously been taken off my walkin duties due to this and don't think I will ever be able to return to them, I just fear now I may loose my job
reply | back to forum

Date: 03.06.2010
From: Sally

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Well put Connor! I'm a painter and there are days when I just can't do anything. I really push my rheumy on meds as need to get back to normal. I got hopping mad when my closest friend said to me the other day 'you don't look like someone with arthritis, you look well." Well, excuse me! What does 'someone with arthritis' look like then? ME! No-one seems to get that I am on steroids too, which always make you 'look well.' In any case, they don't see me in the morning on a bad day when I can't turn the shower on or cut a slice of bread cos' I don't generally go visiting when I am really bad. Grrr!
reply | back to forum

Date: 03.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Alot of people at work also say to me you don't look like there's anythin wrong with you and stuff like your only 28 your to young to have arthritis, there ignorance really winds me up, I'd love them to feel my pain for 10 minutes then try tellin me there's nothing wrong with me
reply | back to forum

Date: 03.06.2010
From: louloubelle

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hey Curtis

I can tell you there is light at the end of the long gloomy tunnel.

I totally understand what you mean about the "you're too young for that" comment. I'm 30 and have had Psoriatic Arthritis for 21 years! I had to have both hips replaced in my early 20s too and people are really shocked when I tell them because of my age!

Connor was right - you have to be totally honest with your rheumy and they have to know how much it is affecting your daily life - they will probably make more of an effort to sort out the correct treatment for you if they know how badly it is affecting you.

I have been on every disease modifyer, anti-inflamatory and pain killer going over the years but finally they developed anti-tnf and I was lucky enough to begin that 7 years ago. I had relief from the PA within a few days and was virtually symptom free within a few months. The psoriasis completely dissapeared within a few months also (I was about 80% covered). My rheumy tells me that between 70-80% of PA sufferes put on anti-tnf have a profound improvement and it really is life changing. I understand they've sped up the process for reaching the stage for being prescribed anti-tnf (it used to be a real nightmare being screened and tested before they'd put you on it). I think now you have to have tried two disease modifyers without success and have two or more swollen and painful joints!

So, I'm living proof that it does get better! I'm pregnant at the moment and had to stop the anti-tnf until after baby is born so I'm having a very real reminder of the severity of the condition but before getting up the duff I was living a fantastically active life - going to the gym and aerobics classes, walking up ruddy great big hills and swimming on holiday and just being pretty "normal".

You will get there. Your missus might not quite understand but I'm sure she's trying. And I'm sure she doesn't mind you having to rely on her. My fella's stuck by me and we've been together for over 13 years - he's had to put up with a hell of a lot of crap but I've always made sure never to take my frustration out on him because he has been a total rock at some super shitty times as I'm sure your good lady will be too!!!

Wishing you lots of "un-flared up" days.

Lou x
reply | back to forum

Date: 03.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

That's so good to hear lou! Hearing things like that make me feel like I can get through this coz to be honest there is no way I could live the rest of my life with this pain it's just crap and all I can think about 24/7 is how much I'm hurtin, how do I go anoint gettin on the anti-tnf? That really sounds like what I need
reply | back to forum

Date: 03.06.2010
From: louloubelle

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hey Curtis

the anti tnf is a kind of last resort type of treatment. You have to have tried two disease modifying drugs (methotrexate / cyclosporin / sulphasalazine / gold injections etc) before they consider putting you on anti tnf. It is really expensive (about 10,000 p.a.) so they need to make sure there isn't a cheaper medication that works first - a lot of people have fantastic results on dmards.

One thing I've found with PA is when you get it in a joint for the first time it is cripplingly agonising for about 6 months but then it does ease off. Although, I first got PA in my little finger after coming off the anti-tnf when I fell pregnant and it was agony but after about a month it eased off! Also, you will find that you will have flare-ups so will probably be much better for a few weeks and then it hits you again. So it's not always as dark as you're finding it at the moment. You will have good days and bad (and sometimes feel as fit as a fiddle one minute and like death the next).

You'll learn to find ways to cope and everyone here is really helpful so if ever you need tips on how to deal with particular things then leave a post and you'll get loads of support.

Here are some things that helped me when I was having really bad flare ups:-

Long hot bath (so long as you know you can get out when you're done)

Lots of rest

Putting your feet up on cushions when sat watching the goggle box

Keeping warm - thick socks, jumpers and the heating on full blast so that the other half has to sit there in their undies

A good cry (although being a 28 year old bloke you probably wouldn't do that but it really helps, I always feel in less pain after a cry)

Take painkiller regularly, even if it's not too bad 'cos if they stay in your system then they do work better - same with anti inflamatories.

Speak to your rheumy or the rheumy nurse if the pain gets too bad - they can give you steroid injections

If the joint stays dead swollen for over a week and feels like it's gonna pop, arrange with the rheumy to have the fluid removed (aspirated) and a steroid injected straight into the joint

Let other people help, most of them will be happy to help 'cos they love you and you can always return the favour when you're feeling better

And finally, keep trying to stay positive 'cos the flare-ups don't last forever

Lou x
reply | back to forum

Date: 03.06.2010
From: curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

thanx lou you really seem to know your stuff about PA, the worst place i am affected is in my toes and feet, one of my toes is so swelled and purple it looks like something out of a horror film, think thats why its getting to me so much as i cant walk properly and its been like this for about 5 days now and kickin a ball about with my son or even picking him up is out of the question at the moment, last week it was mainly my right knee that was mostly affected, i must be due a few good days with no pain soon, ive got an appointment with my rheumy on the 16th of this month, till then i'll try what you have suggested(apart from the crying of course) also is there any pain killers that actually work as the tramadol i take dont even seem to touch my pain, and has anyone had any results from hydroxychloroquine as thats the only thing ive been given at the moment
reply | back to forum

Date: 03.06.2010
From: louloubelle

Subject: Re: Recently diangnosed with Psoriatic Arthritis

I've had pa since I was nine and I always grill my rheumy when i go to see him - plus I am an official smart arse lol

let us know how you get on on the 16th. Tell the rheumy how it is and ask a million questions - who gives a toss if they get annoyed with it, they get paid enough!!!

My mum has pa too and she has sausage toes (that is an actual medical terms for it). The PA sounds as though it's doing the rounds of all of your joints - oh what joy for you :s

Co-codamol work best for me. Actually, co-proxomol were better but I don't think doctors are allowed to presribe it any more. Don't tell anyone but the painkillers always worked best for me with about 4 shots of scotch before bed but I think that was just 'cos I got a good nights sleep and was pissed enough not to give a monkies about the pain!

Lou x
reply | back to forum

Date: 03.06.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi there! Lou, what fab advice! Curtis. I'm 33 had PA for 5yrs but Only diagnosed last August Can totally relate to the pain ruling your life. I've been on mtx since Aug had numerous depot steroid injections and courses of oral steroids but to no effect. I'm currently very swollen and in alot of pain. I'm on morphine and waiting to start Remicade which is an anti TNF infusion. I also suggest giving the Rheumy a ring. Perhaps a course of oral steroids will offer some relief? I usually have these along with the depot steroid injection. Everyone on this forum are so friendly and helpful so do post anytime you need a rant no matter how trivial it may seem. Go well and keep us posted X
reply | back to forum

Date: 03.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Thanx alot guys you've made me feel very welcome and put my mind at ease a bit, at least I won't be in This much pain forever (fingers crossed) I did get prescribed oramorph a few month back but it made me feel terrible, think I may ask to get back on co-codamol
reply | back to forum

Date: 03.06.2010
From: connor

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Louloubelle,

"Who gives a toss....They get paid enough....Don't give a monkies..!"

Wow..You sound like my kind of woman. Don't flower it up gal, just tell 'em straight..!

I'll tell you something. Since the onset of the Psoriatic Arthritis and the discomfort it brings my attitude has changed. I used to be very easy going and smart'ass comments or rudeness from people I would just take. Now if someone just looks at me the wrong way I let 'em know about it.

I'm 60 this year so perhaps grumpy older man syndrome is kicking in. Like you said, who gives a toss..!

Do you think Dirty old man syndrome is next ? Might be interesting...and I should coco..!
reply | back to forum

Date: 03.06.2010
From: louloubelle

Subject: Re: Recently diangnosed with Psoriatic Arthritis

haha Connor, pleased my blunt attitude hasn't offended! Perhaps that's why I receive such good treatment - I don't take any nonsense and the rheumy knows it!

"Dirty Old Man" sounds fun, much more interesting than "Grumpy Old Man" lol

Go well everyone
Lou x
reply | back to forum

Date: 04.06.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Curtis it may be worth trying Co Dydramol as a pose to Co Codamol. It's paracetamol and Dyhydracodine. I found it that was more effective. I was taking eg Tramadol 8am, Co Dydramol 10am, Tramadol 12pm, co Dydramol 2pm, Tramadol 4pm etc and found this a good way at the time. How long did you take the Oramorph for? It took me about 3days of feeling crap on it till my body got used to it. I took x2 5ml/20mg every 4hrs. I started on 2.5ml/5mg every 4hrs and built it up. I now take 50mg MST (12hr slow release morphine) 9am & 9pm and 5ml/10mg up to every 4hrs for breakthrough pain. I hope this offers some ideas/options for your pain management without being too confusing as I do tend to ramble. Keep us posted. Go well X
reply | back to forum

Date: 04.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

No you've not rambled lol, you've been quite helpfull thanx I'll try the co-dydramol an tramadol combo, ask for the oramorph I took it for a week and just felt spaced out everytime I took it but could still feel my pain more than ever
reply | back to forum

Date: 05.06.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Coolio Curtis! I really hope you are able to try the Tramadol/co Dydramol regime. You defo did give the Oramorph a good go eh? I suppose it's like any med, doesn't work for or agree with everyone eh? Anyway Go well X
reply | back to forum

Date: 06.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Thanx Abbie, iv been trying the tramadol/co-dydramol combo since Friday and Im still in pretty bad pain, nothing seems to work it's doin my head in, I'm so tired all the time coz of this pain and my appetite is really bad aswell Im hardly eating anything at the moment
reply | back to forum

Date: 07.06.2010
From: louloubelle

Subject: Re: Recently diangnosed with Psoriatic Arthritis

hey curtis, sorry to hear your still feeling like death :(

With regards to the tiredness, are you drinking plenty of water? I know that when I was having a tough time and having to combine painkillers I found I was thirsty all the time and that if I didn't drink lots (and I mean about 3 or 4 litres a a day) the tiredness would be even worse.

I shouldn't worry too much about not eating a great deal as I would imagine your activity is so low you're not burning up too many calories, so long as you don't lose too much weight I'm sure there's not too much to worry about. Again, I was the same when I wasn't doing too good and just ate little and often, mainly soup, fruit and rice cakes and nibbled on higher calorie but lower fat snacks.

Hope that helps and I hope the painkillers kick in sooner rather than later.

I'm finding the weather's not helping me at the moment - It's really changeable and the pressure keeps going up and down which is really affecting some of my joints. I've got to go shopping on Sunday with my mum and sister and just know that my ankle is too bad for walking about Lincoln so am going to have to use the wheel chair - gay!

Keep us posted hun

Lou x
reply | back to forum

Date: 07.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Thanx for the advice Lou, I woke up This mornin and I feel a million times better the pain is still there in the background but iv not felt like this in weeks, it's so weird how the pain can just tone down like this, I just hope it lasts for a while
reply | back to forum

Date: 08.06.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

And long may it last, take care. x
reply | back to forum

Date: 08.06.2010
From: louloubelle

Subject: Re: Recently diangnosed with Psoriatic Arthritis

yay - let's hope it's a long non-flare up period... fingers crossed.

Lou x
reply | back to forum

Date: 08.06.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Ah Curtis i'm so pleased you're finally getting some relief maybe the Painkillers are now finally in your system propper. Don't over do it though! You take care X
reply | back to forum

Date: 09.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

I've had some pretty scary news today in the form of a letter from my specialist saying I have raised calcium levels in my blood and need to have some more blood tests and if it is still raised I will require further tests, like a fool I look on the Internet and raised calcium in blood can be a a sign of bone cancer aswell as few other very bad illnesses, iv rang the specialist and she insists she thinks it's just something minor, I just can't help but think the worst, has anybody else had simlar blood results?
reply | back to forum

Date: 09.06.2010
From: Dan

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Curtis. Im 34 and have Psoriatic Arthritis. I just made a post about how its affecting me. Cant offer much advice right now as im only beginning the learning process now.

Keep positive about those calcium results, negativity get you nowhere, and your specialist is probably right.
reply | back to forum

Date: 09.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Cheers Dan your hopefully rite, i'm sure you will get alot of good information and help off this site as I have, it's good to talk to people who understand your pain and after reading your post trust me when I say I do know how much pain your going through, I've just gone through about 5 weeks of barley bei able to walk or enjoy any of my normal daily activities,
I really sympathize with you buddy and wis you all the luck in the world
reply | back to forum

Date: 18.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi guys after almost a week symptom free, the arthritis is back and worse than ever before, my feet feel like they are going to explode and even getting out of bed to go to the toilet is a struggle, an worst of all I was supposed to be goin watchin england play tonight, oh well at least iv had a few good days
reply | back to forum

Date: 21.06.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi curtis have you heard anymore about the calcium business? Just remember, If the professionals thought it that serious they'd have had you in right away and got it sorted so please try not to worry. Go well X
reply | back to forum

Date: 21.06.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi no I've still not heard anything back from them, I think your rite if it was that serious they would have been straight back in touch, I'm just trying to stay positive,
reply | back to forum

Date: 26.06.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Curtis! I've not been on this week so just wandered If you've heard anything yet? Also before I could so relate with what you said about struggling even to get outta bed for the loo. Well the worst happened to me the other night. I hurt so much I Only bloody wet myself lol. Anyway, hope you're well! X
reply | back to forum

Date: 27.06.2010
From: Sally

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Have either of you phoned OT to get some aids to help with this stuff? I was in the same situation last year and didn't phone myself and wish I had. They can give you aids to help you get out of bed and off the loo etc. You can get a rail thing that goes under the mattress with bars at the side and some of them will give you a massave wedge shaped cushion thing that keeps you sort of semi-upright so it is easier to get out. My mum had the first one and it helped her massively. Apologies if you know about all this and have it/it doesn't work/they won't give it to you etc. etc. :)
reply | back to forum

Date: 01.07.2010
From: Sandie

Subject: For anyone with PA

I have not been on the site for many months, but wanted to say hi to all again. I have had my problems for 2/3 years and still have not been diagnosed. I would like to state what my problems are and see if anyone is a near match. It all started with pain in both hands and if I don't move my hands for a few minutes my fingers seem to lock and it's pretty painful moving them. Then came both feet pain,including soles of feet, but the thing puzzling medics is the fact my ankles are swollen right the way round them and they say it is not fluid, but don't know what it is. This causes me loads of pain and I can't walk far. I also have pain in both elbows (sometimes) and my shoulders were bad, but one day that pain went away and has not come back!! YAY! Because I am on small dose of amitriptyline and arcoxia it really helps the awful back osteoarthritis, plus both sacro illiac joints affected. Recently in the past few months I have noticed how dry and flaky my face skin is, plus I keep developing small spots with small heads over my face, neck, arms,hands, upper body really. They stay for a long time and it takes several weeks before they fade away. So just wondering if anyone thinks it sounds like there problem too, because at the moment I just feel lost. Have asked for a second opinion and seeing another rheumy at the end of this month. Thanks to anyone who took the time to read this book. PS I am 55 year old female.
reply | back to forum

Date: 01.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

The rheumy now thinks my high calcium levels may be due to a thyroid problem, so I now have epilepsy, psoriatic arthritis and a possible thyroid problem! How lucky does that make me lol, I'm think I'm definatly gonna be applying for dla now anyway,
reply | back to forum

Date: 02.07.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

(((Curtis))) my thyroid is underactive. All I need to do is take my thyroxin and have blood tests 6th monthly but does mean you get free scripts. Who know's why eh? X
reply | back to forum

Date: 02.07.2010
From: Abbie

Subject: Re: Recently diangnosed with Psoriatic Arthritis

@Sandie, please don't take this as read but the spots sound like pustular psoriasis which means your pain could be Psoriatic Arthritis. I would mention both of these complaints to whichever dr you see. Go well! XXX
reply | back to forum

Date: 26.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi all just got back from my rheumy and apparently what they thought was psoriatic arthritis is now Seronegative Arthropathies, don't know what this changes! Is This better or worse than having psoriatic arthritis? They have also said that after my last x-rays I have permanent joint damage in most of my toes an left wrist even though i do feel alot better In general, I have been given the choice of 2 new medications and told to give serious thought to which 1 i want to take they are sulphasalazine and methotrexate the rheumy said they are both good but both have down sides, can anybody give me an insight to the new condition I've been diagnosed with an help me make a decision about which medication to go for? Oh yeah my calcium level have gone back down so that is 1 good thing
reply | back to forum

Date: 27.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Can any1 tell me there experiences with above medications please I really don't wanna make a decision till I've heard peoples experiences
reply | back to forum

Date: 27.07.2010
From: Teresa

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Curtis, I can only give you my experiance of Sulfasalazine as im waiting to start Methotrexate!
I had absolutely no side effects with the sulfasalazine at all... for the first few weeks. Then on week 3 I developed a rash, week 4 my whole face swelled up. Had a dose related allergic reaction to it. Bit of a bummer really because until then I was getting along just fine with it. No headaches, feeling sick, nothing that some other people say they have!
Good luck with which ever you decide to try and I hope it works well for you.
Take care
reply | back to forum

Date: 27.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Thanks alot for the reply Teresa that sounds like a pretty bad reaction, I'm really thinking of just goin for the Methotrexate iv heard alot more positive things about it, the only worrying thing is the way it stops your immune system from working properly, I have been feeling great lately and haven't had a flare up In weeks but my rheumy insists I need to start on one of these medications due to the nature of my arthritis, she says it may be ok now but it definatley hasn't gone away, which i don't really need reminding of lol
reply | back to forum

Date: 27.07.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Paul I have only been on mtxt, so dont know about sulfa.. I have been on mtxt since December, got up to 17.5mg had a lot of mouth ulcers, headaches, feeling sick. Had a throat infection so was told to come off the mtxt until i finished antibiotics, 3 weeks later i was back on it and it just does not work for me I have new joints and tendons joining the party regulary.Some people get a lot of relieve from it unfortunatly I havent but from what I have heard it is different for everybody. Good luck with whatever you decide.tc
reply | back to forum

Date: 27.07.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

SORRY I meant Curtis not Paul...... sorrrryyyyy
reply | back to forum

Date: 27.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Lol no problem Lynn thanx for taken the time to share your experience with me, I'm finding it really difficult to make a choice, where you on tablets or injections? I was told if the tablets did not work that injections would be the next step,
reply | back to forum

Date: 27.07.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Curtis I am on mtxt tablets, but have been told because of all my other health problems I can go on the anti tnf soon. It cant come quick enough for me. From what I have heard the injections do come next and you dont have as many side affects,It is hard not knowing which one to choose good luck sorry i cant be more help, but let us know which one you go on and how you get on. tc
reply | back to forum

Date: 27.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Thanx again Lynn good luck with your new meds to hope they work well, just out of intrest wat sort of arthritis do you have? As I said before my diagnosis has gone from psoriatic athritis to Seronegative Arthropathies an I reallly can't find any good information about it, is this worse that psoriatic?
reply | back to forum

Date: 28.07.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Sorry Curtis, dont know if its worse or not. I have got psoriatic arthritis, ostio arthritis and ostioporosis. Have you tried google you should get some info there.But to be honest like jill always says whatever arthritis it is its all bliddy painful.take care.
reply | back to forum

Date: 28.07.2010
From: Curtis

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Your rite Lynn no matter what the name of the arthritis it is painful as hell, thanx for the insight into your experience with the meds aswell, still not decided yet lol,
reply | back to forum

Date: 30.07.2010
From: Tom H

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hello All!

I have been looking for a decent forum and I think I may have found it here!

I thought I'd attach to this one rather than start a new one as I was diagnosed with PA 4 months ago.

I have found reading this thread very interesting and thought I would tell you my brief story and hopefully some will find it useful and I may get some advice from you.

In sept09 I "wrenched" my back playing golf, had about 12 physio sessions up till december whereby they told me that they though I had done damage and should see a specialist. I got an appointment but before I could go I had my first child (well my partner did anyway) on dec 7th and we went back to Wales (I live in London), ended up staying for a while as my partner had complications and then on 2nd Jan, my knee "went" at some point, i had no trauma so could not understand what had gone wrong.
Over the next 3 weeks my knee went massively swollen and was told all different things but basically that I had strained it.
I went private and had the knee drained on 1st feb. To cut a very long story short, i had my knee aspirated a further 3 times before an arthroscopy just showed massive inflamation.

Gradually my neck hips and back were really starting to ache and was seen by a rheumy who told me that I had PA (end of Aprilish). My nails had stated to pit as well and I had jaw pain. (classic symptoms it seems)

Had my knee drianed and 3 seperate steroid injections since then, I was put on Sulfasalazine.
Had been on it for 2 months when after a routine blood test it was revealed that i had an extremely rare reaction where my neutrophil count and white blood cell counts plummeted. I had blood test every single day and loads of antibiotics and self serve injections until i was right.

Obviously i had to stop the drug, I'm now waiting for body to recover before starting MTX.

have to go, more later, sorry if its been a bit lenghty so far...
reply | back to forum

Date: 30.07.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Tom, and welcome to the forum so sorry to hear all you have gone through. there are a lot of lovely guys on here, Whatever you need to know there is always someone who can help you. I too have PA. We all have some sort of arthritis, so there is plenty of people to talk to, please let us know how you get on. take care.
reply | back to forum

Date: 30.07.2010
From: Sally

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Sounds a bit full on Tom! How are you doing without any meds? Like you, I was referred to physio several times firstly for my shoulder. When I went I could hardly get out of the chair as my knees were so bad - he thought he'd got the wrong patient.
reply | back to forum

Date: 30.07.2010
From: Tom H

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Thanks for your prompt replies and kind words.

It's strange without meds, I'm pretty sure the sulfa had started to work. They say it will stay in my system until sept. I expect my symptoms to get gradually worse so have geared myself up mentally for that. Currently my back and neck are pretty bad, although my neck was much worse 2 months ago ( I had to wear a brace).
Also my (Inverse) Psoriasis is really bad at the moment, my scalp is covered and the flakes are really embarassing. Anybody else get this?

Don;t mean to moan, I'm generally pretty good at the moment although a bit lethargic, not sure if thats just the PS or a reaction to what I've just gone through (neutropenia)

Cheers, Tom
reply | back to forum

Date: 30.07.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Tom you moan as much as you like.. we dont mind as for the psoriasis mine was realy bad scalp, legs all over my arms. Once I started the mtxt it did start to clear up i couldnt believe I was completely clear after 12 weeks had to come of meds for a while and it came back, but its starting to clear again, fingers crossed so hopefully it might help your scalp. t.c. ,
reply | back to forum

Date: 28.11.2010
From: sassy

Subject: Re: Recently diangnosed with Psoriatic Arthritis

HI I was diagnosed with PA in March of 2010.I have had some bad reactions to both sulfasilizine and Humira, Doc put me on Vicodin but still in soooo much pain all ther time especially in low back and hips anyone else have these problems
reply | back to forum

Date: 29.11.2010
From: Lynn B

Subject: Re: Recently diangnosed with Psoriatic Arthritis

Hi Sassy, yes I too have a lot of pain in the very bottom of my back and hips, and also right down my thigh. Think its part and parcel of this disease. t.c.
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

5+2=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board