Permanent joint deformity?

nanarose

Hi, I'm a newbie, but I just wondered if anyone could give me any help with this question.

I have Psoriatic Arthritis and have been on methotrexate for nearly 6 weeks, however so far it doesn't seem to be doing a lot, but I know it's still early days yet.

It took nearly two years to get a diagnosis, and I was only diagnosed after I developed the tell-tale 'sausage' toes, which is indicative of PA.
I now have severely swollen toes on my left foot, which are continually red and sore and are totally inflexible. ( I also have swollen fingers now too.)

Has anyone else had this problem, and do you know if my toes will ever go back to a more normal state?
I'm falling apart at the seams, but at least I had quite pretty feet before all this happened!

My Rheumy nurse is wonderful, but she says I will have to be optimistic and wait and see what happens, so any info on this would be much appreciated.

I look with longing at all my gorgeous high-heeled shoes, then shuffle back into my scruffy crocs as they are all I seem to be able to wear lately.....how stylish...not!!

dreamdaisy

Hello nanarose, my name is dreamdaisy and I too have PA, but not in the usual sense: I don't have the P bit (well, not very often and not very much) and the arthritis began in my left knee. As the disease has progressed, however, my toes and hands have begun to be affected. At my last DAS test I scored 31 affected joints.

I have been on injected meth for some time, and I can truthfully say it has done nothing for the PA in any way, shape or form. I also take humira (which has worked wonders in terms of reducing inflammation levels: they have been in single figures for over a year) and oral steroids (which mask everything wonderfully well and give the illusion of being better). I also take an anti-inflammatory which again has little effect, as far as I can tell. Pain levels have not decreased at all.

When I have a flare (and I have one from hell at the mo) my toes and fingers do swell, but once the flare lessens, they return to their normal size. As I have not followed the usual path with PA symptoms I am not sure how much use this info is. I too wear crocs throughout the year - I am permanently on crutches when walking and cannot tolerate any heel at all. I'm still glamorous on the inside tho. Sometimes.

I think that our version of arthritis is a particularly tricky one a) to diagnose and b) to treat. There are other PA people around here and I am sure they will pop up with their experiences. The only plus I can think of about it is that it rarely affects the hips or spine (or so my booklet about it says!) The meth does take time to kick for some people, and you may need an increased dose to achieve any gain. Everyone reacts differently to it - I have had no side effects from it, but there again it hasn't done anything. Are you taking anything else beside the meth? Ummm, brain's turned to porridge again, I'm sorry - off for another doze. I wish you well. DD

nanarose

Hi Dreamdaisy and thanks for your reply.

Unfortunately I have quite severe psoriasis and have suffered from it for years, although it's only gotten really bad in the last 7 years or so.

My Dermatologist was debating using mtx as my skin wasn't improving with all the usual treatments for psoriasis.
So sooner or later I was going to be on mtx, and unfortunately it's for the arthritis.
I'm currently only on 12.5mg, but that is being raised again this week. I take pain meds, (loads) and diclofenac, but generally they are only masking a tiny bit of the pain.

I have re-read my notes and apparently I have a swollen joint score of 23......and I also have a hugely swollen knee, hands and other bits'n'bobs!!

I just hate to think that I will be left with horrible feet, as it's so difficult to do anything when you can barely stand, far less walk around.....Oh my goodness, my second post, and I already sound like a complete moan....Sorry. :shock: I'm generally a very upbeat person, and I prefer to think positively, rather than look on the worst case scenario.

It's just great to be able to sound off with folks who really understand how difficult this condition is to live with.
I guess it's just wait and see, like the Rheumy nurse said.....I wish I were a more patient, patient!

dorcas

Hi nanarose nice to meet you

there are a lot of PA peeps on this forum and I suppose everyone has a different story to tell on how this form of arthritis affects them.

I've had PA (without the psoriasis) for 15yrs + and have the classic 'sausage digits' too on hands and feet...but not every toe or finger is affected . When not in active 'flare' the redness goes and the swelling does go down.... but after years of fluctuating PA it has left me with rather knobbly looking finger & toe joints.
How the disease progresses and how it affects us is a very individual thing so I cannot predict what you are likely to experience and whether or not you can expect damaged joints.... I hope not, especially with the right treatment.

Mtx can take up to 12weeks to work and effectiveness and dosage varies ...if worried about it then why not phone rheummy again for advice?

I have posted a link for you to the Psoriasis and Psoriatic Arthritis Alliance website (PAPAA) which has excellent information on all aspects of this form of arther.

http://papaa.org/tiki-read_article.php?articleId=26

hope to see you posting around the forum :!:

Iris x

nanarose

Thank you Iris for the link to the website....I'm off to have a read now.

As you say, each person is different, so fingers crossed...erm.....forgot I can't do that .....but I shall keep optimistic in the meantime.

dreamdaisy

Hi nanarose, I'm sorry I haven't replied before now but I have the flare from hell. The psoriasis side of things is unusual for me - I have some on my right sole and a new spot on the outside of my left ankle, but that is due to the flare. I have always been more troubled by the arthritis side of it all - miserable that is too. Ummm, I can't remember what I was going to say - my brain is like porridge and I have suddenly wilted! Up the wooden stairs to Bedfordshire now - I'll make a better fist of this tomorrow, I promise. DD