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Date: 24.08.2010
From: jake

Subject: Psoratic arthiritis

HI All
i have been diagnosed with this in April this year, at the beginning my ankle was so swollen that i couldnt wear shoes/socks after running back and forth to doctors who thought it was gout and no meds were helping theyt sent me to a rhumethologist who instantly diagnosed PA.
3 months of Diclofex and one cortizone jab later the swelling has gone down considerably but pains in different joints are always there.
in the beggining on a scale of 1-10 10 being the highest i had about 9.5.
i used to wake in the morning with a sensation like my legs were being twisted 360 degrees.
A new rhum gave me a cortizone jab and it significlly reduced the swelling pain after around 2-3 weeks of recieving.
my Wife gave birth in June and i couldnt even hold the baby for more than a few minutes it was that bad.
the pain has dropped to around 5 now and i am finding more like aches/cramps in the fingers and heavy feet like i would be walking through water when i walk too much.
constant fatigue is a problem and after some blood test i was told my vit D level is extremly low and am pushing that up now.
my docs are desperate for me to start Methotrexate but i am more afraid of the side effects and i feel that the pain is almost bearable now (well not really but i guess i am learning to live with it), my question is that if i dont take it am i damaging my joints will it get worse? at what point to you say you have no choice?
i feel its easy for the doc to say start taking and we will monitor, its not him on the end of the day.
i am 38 yrs with 5 kids and i am not quite ready to give up without a fight although i am finding it to be emotionally really tiring.
i have got the pills at home and i just havent got the guts to take it, am i right?
also i find that the Dicloflenac is doing my stomach no favours.
its so frustrating, i tell my rhumetologist that im in such agony when i walk for long distance, can i have a blue badge? he answers " you are only disabled when you are i a wheelchair" what should i do if i feel disabled?
sorry for my rant but its starting to wear me down now........
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Date: 24.08.2010
From: jake

Subject: Re: Psoratic arthiritis

oh and one more thing, does anyone find that the effected joints get strange like muscle loss thinned down, my wrist were i were my watch is almost flat, my ankle is really thin and weird now?
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Date: 24.08.2010
From: Teresa

Subject: Re: Psoratic arthiritis

Hi Jake, like you I have PA, and just like you the docs want me to take methotrexate but I am to worried about it! I have the prescription at home and the chest xray form but I just cant bring myself to start taking them. The more I read up on them the more afraid I become. I know that I will be closely monitored but that does not make my decision about whether or not to take the methotrexate any easier!
Like you I also wondered about whether not taking the methotrexate will make any possible joint damage worse. Especially as I have read that PA 'can' be less damaging than RA. So im going to ask my Rheumatologist about this in October and make my decision then. If he really feels its needed then I will take them.
I hope you find the answers you need to help you decide what to do!
Take care
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Date: 24.08.2010
From: jake

Subject: Re: Psoratic arthiritis

Hey Teresa
how long do you have pa? is the pain bearable?
i will never find the answers or know if i made the right decision either way.
take care
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Date: 24.08.2010
From: Teresa

Subject: Re: Psoratic arthiritis

Well I was diagnosed with PA last December. But I started with pain in my fingers and hip about 2 years before that but kept screwing up all the blood forms etc because I was too scared to find out what was wrong with me! Eventually when the pain began in my wrists, elbows, toes etc I had to bite the bullet and the bloods showed inflammation and I was refered to a rheumatologist who diagnosed PA straight away.
Most of the time the pain is bearable with pain relief. But I do get times when no matter what I do or how ever many boiling hot baths I soak in the pain just wont give.
I think one of the things I find hardest to cope with is the unpredictable nature of it! The fact that you can go to bed with pain in your fingers and wrists that is bearable but for no reason whatsoever, wake up with terrible pain and swelling in your toes and hip and suddenly you can barely walk!
How long have you had PA? And how do you find the pain?
Take care
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Date: 24.08.2010
From: Jake

Subject: Re: Psoratic arthiritis

oficially since April, but there was was many minor things which although sound silly are now attributed to it, like my watch getting loose one week tight the next, the feeling that you cant wear your shoes for a few weeks,cant stand up from the toilet thinking that for some reason its to low.
belive it or not i was into boxing and martial arts prior to this.
I am struggling to decide if i can cope with the pain, i actually have the methotrexate at home and i have felt like saying to hell with it and just taking it but have always chickened out>
my only consulation at the moment is that the pain was worse at the beginning and is better now.
Chin up,ouch.....:-)
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Date: 25.08.2010
From: Abbie

Subject: Re: Psoratic arthiritis

Hi guys! I was diagnosed with PA a yr ago. I'm on mtx shots, prednisolone, regular depot steroid shots and morphine for the pain. Like you guys I was initially nervous at taking the mtx (i had them in pill form to start off with) started on 10mg and Only side effects was being wiped out for 24hrs and headache next day. As dose increased became very nauseous and when dose when up again felt sick and was being sick 24/7. I then started having half my dose Sun and half weds and then felt fine. Because it wasn't working and coz of the sickness I then went on to the shot and haven't looked back! Only side effect I get now is being wiped out for 24hrs. You get less side effects on the sickness front with the shot coz it doesn't pass through your stomache. Even with PA the mtx reduces damage aswell as inflamation. It's not an overnight fix though. Can take up to 8months to fully kick in. Unfortunately it still isn't working for me 1yr on and I rely heavily on steroids and morphine which isn't good. 3 weeks ago I had Ciclosporin introduce but had to come off it at the weekend coz side effects unbearable so waiting to go on anti tnf Infliximab/Remicade. I hope you are soon able to make the decision that is right for you! Good luck guys! Go well X
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Date: 25.08.2010
From: Jake

Subject: Re: Psoratic arthiritis

thanks for your comments guys, basic question i think and its the million dollar one.
Do you go on the MTX when you feel that you cant take anymore pain? or do you accept a certain amount before you hit the bottle?
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Date: 25.08.2010
From: jake

Subject: Re: Psoratic arthiritis

Out of interest, has anybody been to the dead sea? they say it help tremendously but i am struggling to find out minimum time to spend?
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Date: 26.08.2010
From: louloubelle

Subject: Re: Psoratic arthiritis

hey, i've had PA since I was 9 years old (I'm now 31). I have been on mtx a few times in the past (stopped taking it during my late teens as I was enjoying going out drinking too much). I didn't suffer from any side effects of the mtx and had been put on a high dose. You are monitored carefully and if you do suffer side effects they do stop the meds straight away so, in my personal opinion it is worth giving it a go (it would be terrible to think it may work wonders for you and you never gave it a try). Not only does this type of drug help relieve symptoms but, more importantly, helps to slow down disease progression. As someone who has undergone hip replacement surgery I would advise that this is a really important element of managing the condition.

I've not been to the dead sea Jake but did always bathe in dead sea salts to help relieve the tightness of the psoriasis.

All the best
Lou x
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Date: 26.08.2010
From: Sally

Subject: Re: Psoratic arthiritis

hi, I've got another type of arthritis and didn't want to start Mtx. Like Abbie, it isn't working for me and I rely heavily on steroids. However, the mtx does give some protection from joint damage even though the pain is bad. You need to be careful about that and take some Dmards to prevent that heppening. It works well for some people. The side effects are not nearly as bad as I feared though do get fatigue and lots of minor infections, but I've always been prone to them anyway.

I think your rheumatologist saying you are only disabled when you are in a wheelchair has very little understanding what a disability is. I'm not in a wheelchair and I feel very disabled by my arthritis. I applied for a blue badge and got turned down because I can walk a bit, even though it hurts. Think it is bad that you can't get support while the drugs kick in and before things are so extreme.
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Date: 27.08.2010
From: Teresa

Subject: Re: Psoratic arthiritis

Hi everyone, thankyou all for your positive messages about your experiences with methotrexate. I did try sulfasalazine and for the first few weeks had no side effects at all. Then when I got to taking the maximum dose I had an allergic reaction and my face swelled up! I was not to bothered about it though.
I am actually not to bothered about most of the possible side effects of the methotrexate.. the feeling or being sick, the headaches, feeling tired etc I can live with all of that. Its got to be better (if not worse) than constant pain in your joints every day. What totally freaked me out and put me off taking them was when I was told to have a chest xray first! I then looked into why and its the thought of maybe suddenly getting lung damage, or irreversable liver damage that does my head in. I know they are very rare side effects but I cant stop thinking what if it happens.
It does help to hear when people say they have been taking methotrexate for years and they are ok!
Anyway, all the best. x
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Date: 31.08.2010
From: jake

Subject: Re: Psoratic arthiritis

my small finger is killing me and now bends upwards, also my wrist is aching.
fighting the urge to go for the mtx is there any short term solution for acing joint? like a cream........
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Date: 01.09.2010
From: prncss1230

Subject: Re: Psoratic arthiritis

I was dxed with PsA about 7 years ago, after going for a few years with pain travelling to different joints. I have had psoriasis since I was 12, and just thought I had regular osteoarthritis. When it hit my hands, I started researching the internet, and basically self-diagnosed myself. I went to my primary MD and told him my symptoms, asked for specific blood tests (SED rate, CRP, HLA-B27, etc), and results confirmed my suspicion. I was started on methotrexate right away. When my CRP didn't go down enough, he added Enbrel. I couldn't tolerate it, had intermittent low grade fevers and severe fatigue, even had to take 3 months FMLA from my job until I began to regain my energy. Then we tried Humira, which really didn't make much of a difference, and also made me have frequent viral infections, so we discontinued that. I am now on difluconec for inflammation, cymbalta for pain (cymbalta is a "crossover" drug that is used for depression, but believe me I have never been depressed and am always happy-go-lucky), and tramadol for the pain. After not taking care of myself over the past year or so, and concentrating on the care of my 89 yr old Mother who lived with me, I noticed some symptoms getting worse. I started having bad lower back pain about a yr and a half ago, like all the time. About 6 months ago I noticed a toe joint a little deformed. About 3-4 weeks one of the last joints on a finger was bulging, so I got back to my rheumatologist. She wasn't too happy with me and wouldn't let me leave her office without stabbing me with a free sample of Simponi. I got a card for a program run by Simponi's drug company that gives the medication to you "FREE" for 6 months, and the second 6 months it's just $5 per month. The shot (via epipen)is just once per month (not twice a month like Enbrel and Humira), and less painful to receive too! Now for the good news...just 24 hours later my back pain was gone, that was a week ago! And, yesterday my knees felt great as I went down a flight of stairs! Halleluiah!!! My fingers, wrist, and elbow are still bothering me, but hopefully in time they will feel better too. I can't say it enough, how excited I am about this medication. Of course, what works for one person might not work for the next, but you just have to keep trying new things if something doesn't work. Also remember this - unless you are taking "biologic" medications, the disease will do damage...remember that psoriatic arthritis attacks all soft tissue in the body, not just joints, so that's everything, skin and contents! Well, just one little side note, I started to get a cold yesterday, I have not had one for some time. But I am going to stick (pun, lol) with this Simponi!
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Date: 02.09.2010
From: Jake

Subject: Decoflenac

Oh well visited another rheumatologist and he basiclly told me i have no option but to start the MTX straight away.
So will start over this weekend, i compalained about intense stomach pains from the Dicoflenac so he prescribed Arcoxia which i am waiting for now.
has anyone else found this problem with Dicoflenac?
The stomach pains are pretty bad
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Date: 08.09.2010
From: jake

Subject: Re: Psoratic arthiritis

Hi all
today i feel as crawling sensation in my fingers all day, its almost like i would have a spider under the skin, also overextending fingers driving me nuts, is this part and parcel?
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Date: 11.09.2010
From: Abbie

Subject: Re: Psoratic arthiritis

Hi Jake Diclofenac really made my stomache bad even though I was taking a PPI (Lansoprazole) with every dose so was put on Relifex. Be careful though because most anti inflamatorys shouldn't be taken with mtx. Go well X
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Date: 13.09.2010
From: Jake

Subject: Re: Psoratic arthiritis

HI All
Finally took the MTX saturday night, (could'nt take the pain anymore)i can live with the slight headache as well as the tiredness but the sickness is killing me, i threw up like a dog it was so bad and i still feel sick today, anybody have any tips on how to get rid of the nausea?
i got to go to work and i feel pretty grim.
as always your input is most appriciated.
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Date: 13.09.2010
From: Lynn B

Subject: Re: Psoratic arthiritis

Hi Jake, how much mtxt are you taking, and did you take it in the evening. If you take it at night you can usualy sleep some of the nausea of. Also it might help if you take half one evening and the other half the next. Its just a thought I know some people do and it helps. Do you take folic acid to help with the side affects. I take 5mg 6 days a week and it realy does help also I take it with a biscuit and a glass of milk.Take Care.
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Date: 13.09.2010
From: Jake

Subject: Re: Psoratic arthiritis

HI Lynn
it was 10mg and i took a 5mg folic acid along with it, i feel like i have just got off a long haul flight, still a bit naueses and i took the meds on Saturday night.
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Date: 13.09.2010
From: Teresa

Subject: Re: Psoratic arthiritis

Hi Jake. Sorry to hear you are suffering after taking the MTX. I was going to take my first dose on Saturday, but was not brave enough, so decided on Sunday and wimped out again. I WILL take them today. I have been told to start with 7.5mg then 10mg the following week then keep upping it weekly till im on 15mg a week. I have been told to take a 5mg folic acid every day apart from the day I take the MTX on.
Did every one here have a chest xray before starting the MTX? Because I chucked my form away because I did not want the drugs and now after 4 months of persuasion from my GP and rheummy I realise I better start doing something (other than sulking) as one of my fingers no longer straightens anymore. But I have not had the chest xray done? And really cant be bothered to trawl up the hospital again if its not totally neccasary?
Take care
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Date: 13.09.2010
From: Lynn B

Subject: Re: Psoratic arthiritis

Hi jake, you dont take the folic acid on the same day as mtxt.. 10mg seems a lot to start on I started on 7.5 and worked up to 17.5mg but the side effects were awful, so I was told to go back to 15mg with folic acid on 6 days but not mtxt day. I still do get mouth ulcers and cold sores but not to bad now, at least the headaches and nausea have gone.I would certainly ring your reummy or the reummy nurse and have a word. t.c.
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Date: 13.09.2010
From: Lynn B

Subject: Re: Psoratic arthiritis

Hi Teresa, Yes I think you should have a chest x ray you have to be bothered just to make sure everything is ok.I cant understand why you have been given the mtxt without the x ray results? let us know how you get on t.c.
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Date: 13.09.2010
From: Teresa

Subject: Re: Psoratic arthiritis

Hi Lynn, the rhummy nurse gave me xray form and asked me to get it done before I started taking the MTX. She then said to collect my prescription for the MTX from my GP. This was about 4 months ago. I never did have the chest xray done because it all freaked me out a bit and I decided I was not going to take it. But now my GP has persuaded me to at the very least give it a go because the sulfasalazine gave me an allergic reaction and I cant take it. So I have the MTX but not had the xray done. So by the sounds of it I should not start taking the MTX until I have the chest xray done. Excellent reason for not taking it today :) :)
Take care
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Date: 13.09.2010
From: jake

Subject: Re: Psoratic arthiritis

HI Teresa
No chest xray here either, i had a bone scan if that counts for anything.
i also didnt have the guts but just took the plunge in the end.
my small finger is awfull now has a mind of its own almost,i have a relative who refused to take anything and is now permenantly disabled so i reckon we got to do it, its horrible, im only 38 and belive me this is changing my life in a big way.
i cant live with the actual pain and anti inflams werent doing enough and im not sure if this is physcalogical but i am getting less pain, most say it takes at least 12 weeks to work. maybe i have given a major shock to the system..........im rambling on now.
Be well.
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Date: 14.09.2010
From: Lynn B

Subject: Re: Psoratic arthiritis

Hey guys, dont want to be a pain in the a...e but you will need to do something to stop the damage. Ok If the mtxt does not work you will be put on something else, guys we have all been there!!. It can take a while, it can be frustrating it can be painful It is trial and error. The same thing doesnt work for everone but you will.. find something that helps, I know what you are feeling and so does everyone else on this forum. But remember you are being monitored regulary with the blood tests, sorry I know I am going on a bit, but nothing ventured nothing gained as they say. take care.
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Date: 14.09.2010
From: Lynn B

Subject: Re: Psoratic arthiritis

And also Jake and Teresa, Fatigue is part and parcel of this disease. You will have to listen to your body It will let you know when to slow down, stop have a break or catch 10mins It is a horrible s....y disease we have to live with. And you have to pace yourself, sorry I know I have gone on but you both needed a kick up the butt... Sorry It can take a long time to come to terms with (hope you still talk to me) take care.
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Date: 14.09.2010
From: Teresa

Subject: Re: Psoratic arthiritis

Lynn, Thank you for all your advice. Its lovely and reasuring. Its good to chat with someone else who knows how you feel!
RE the fatigue.. my GP and rhuemmy did not tell me about that part of it. At first I thought that there was something very seriously wrong with me. Im sure you know only to well that awful sense of exhaustion im talking about, where no matter even if you sleep or rest you still feel like death. I found out about the fatigue from reading posts on here and the leaflets I was given from the rhuemmy nurse.
I wish I could just turn back the clock a few years and be me again, before all this started. Have my old job back that I loved so much! Sometimes when im out I watch people that are older than me (im 36) in their 70s and 80s and they can walk faster than me! It makes me so mad :( Anyway im rambling and getting bitter again!
Thanks for all your kind words of advice. tc x
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Date: 14.09.2010
From: Lynn B

Subject: Re: Psoratic arthiritis

Teresa, most of the things I know about this disease is from the guys on this forum. they have told me more and explained more than my reummy or gp have ever done. There is always someone here to talk to and even if we dont know the answers one of us will more than likely know how you feel. I wish I could have my life back the way it was,But we all have days like that so when you have a good day you enjoy it even more. Not going to ramble anymore you take care. x
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Date: 15.09.2010
From: Jake

Subject: Re: Psoratic arthiritis

My rhuemmy called me this morning and i told him how i felt after the mtx he asked me what the dosage was that i had been prescribed, he was quite suprised when i told him 10mg, he reckoned 1st time should be 2.5 and move up gradually so new presc on the way.
he also advised taking the anti inflams in the morning and the mtx in the eve.
do any of you experience stomach pains from mtx/arcoxia? my stomach is cramping quite alot lately.
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Date: 15.09.2010
From: Shirley

Subject: Re: Psoratic arthiritis

Hi Jake,
I'm in my 9th week of Mtx and seem to have escaped the tummy pains so far. I had to start on 4 x 2.5mg then 5 and build up to 6 once a week. I also take Diclofenac 3 times a day so I take these after each meal then last thing at night on Mondays I have a bowl of cereal and take the MTX. I also have to take folic acid three days after but I never take any of these meds on an empty stomach even if I have to force myself as I seem to have very little appetite at the mo. Hope this helps, take care.
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Date: 15.09.2010
From: jake

Subject: Re: Psoratic arthiritis

HI SHirley
thanks for that,i am taking it on a full stomach, i am sure im eating less yet i am putting on weight,Things like coffee seem to agravate my stomache so i am wondering if something has happened to my stomach from the meds or if this is common?
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Date: 19.09.2010
From: Jake

Subject: Re: Psoratic arthiritis

does anybody get pains in the left side from the MTX? i get some pains not sure if i need to panic though?
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