Posted , 6 users are following.
Hi, I have been diagnosed and treated for rheumatoid arthritis for the past 10 years. I recently but came across a study on Arthritis Research UK on palendromic arthritis that describes my symptoms to a t. I think I have been misdiagnosed, wondered if anyone had any experience of this type of RA?
0 likes, 23 replies
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joan69322 Pavoniarem
Posted
elle09679 Pavoniarem
Posted
This is very relevant to me at the moment. I have been on MTX to treat RA for 2 years but I think it is almost definitely palendromic because of the way it flares up suddenly and often just for a couple of days each time. I emailed the rheumatology nurse who said even if it is that they would treat it in the same way. My question is, if has no lasting damage is it worth taking strong needs like MTX? All my blood results indicate RA but I'm guessing that that can be the same results for palendromic? Also, do they use DAS 28 to assess level of disease in palendromic or just in RA? Sorry, lots of questions!!
janmary Pavoniarem
Posted
New to this forum, buthave had a diagnosis of Palindromic sero-positive RA for about 7years. As far as I can see, it really just refers to the fact that joints are randomly affected, rather than synmmetrically, and that joint inflammations come on very quickly - mine usually start in the mid afternoon and by evening are acutely swollen,painful and I feel shivery and ill. And yes, I do get it in my neck sometimes - shoulders, hip, small joints etc. It's not quite as dramatic as it was at first and has left my feet alone for a year or so shhhhhhhhh..... I'm not sure that it's the methotrex that's subduing it, but don't dare stop it to find out! There is a Palindromic site with a downloadable pamphlet written by a patient, which explains what it's like
I'm reated as for 'ordinary' RA with methotrexate.
pauline06122 Pavoniarem
Posted
I had also experienced stiffness in my feet on waking for several years which Were put down to Rhynauds.
I consulted my GP and blood test were done. My anti ccp levels were through the roof. This lead me to consult a Rhuematologist.
Pallindromic Rheumatism was diagnosed, but now has been changed to Pallindromic Rhuematoid Arthritis.
Has anyone else have their diagnosis changed?
i have found it almost impossible to find any literature on the condition. I would appreciate any information
Pavoniarem pauline06122
Posted
Hi Pauline. Are you on Facebook? If you are you, sign up to the Palindromic Rheumatism Group. Everything you need to know (and a lot more besides) is there. It's been a great support for me. All the very best.
pauline06122 Pavoniarem
Posted
Pavoniarem pauline06122
Posted
Palendromic rheumatism is in no way trivial. It's a very painful disease that is all but hidden from public eye. Sometimes when I have a flare, particularly in my shoulder, there is nothing to indicate what is going on yet I am crippled with pain. my Rheumy never bothered to tell me I had this form of Rheumatism until 8 years into my diagnosis with rheumatoid arthritis. He thinks that the two are the same thing but they are not. I was furious because all that time I had flares that didn't sound the same as other RA sufferers. When I found others with PR it all made sense. It's horrible that you also have it, but, hopefully now you can get the support and answers you need. All the best x