PsA: I have PsA and my intention was to just have a... - NRAS

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PsA

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I have PsA and my intention was to just have a look at this forum now & again, just to keep up with RA really in case my diagnosis changes back to RA (don't think it will but it swung back & forth in the early days). I often see posts & questions from people with PsA & often reply to them.

It seems to me that there are more people here with PsA every week. I've not exactly done a mathematical analysis so 'seems' is as accurate as it gets. But does anyone think that PsA is being diagnosed more often? It's not that long ago that it was considered to be a mild form of RA & understanding of it has grown hugely in the last few decades I believe. Current thinking is that it is not a meek & mild little condition at all but some rheumys seem to be playing catch-up and don't seem to be very confident about treating it.

It seems to me that there are more people here with PsA every week. I've not exactly done a mathematical analysis so 'seems' is as accurate as it gets. But does anyone think that PsA is being diagnosed more often? And also I'd say to anyone with PsA that it's a good idea to investigate what it's all about because despite the similarities with RA there are differences.

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Hi Postle. It could be because I've suffered from severe eczema for most of my life but personally I have never had the idea that PsA was a milder condition than RA. I know three people with it and several more who are regular contributors to the Arthritis Care forum too. Some of these people seem far more severely affected by it than many of my RA friends have been so I am inclined to see it as a more scary condition because it affects joints AND skin. It seems that those who suffer from it severely are often fast tracked on to Biologic drugs because DMARDs don't work as well apparently.

I don't know whether it's more commonly diagnosed than it used to be but if so I think that can only be a good thing. And I'm really glad that all those with PsA who choose to come here do - and hope this continues because for me, with a bit of autoimmune spread, RA is just an umbrella term and there is so much overlap that commonalities are the important thing for forums such as this. We share drugs, autoimmune add ons and pain. There are psoriasis forums but some with PsA don't have much, if any psoriasis, in which case these forums could seem lonely places for them where only psoriasis is talked about? Please carry on posting here Postle your comments are always very helpful. Tx

in reply to

Thanks Tilda, you summed me up well. xx

Hello Postie

I have the arthritic form of PSA and the actual skin condition, I have been like that now for over thirty years ago getting the RA element at about thirty years. This condition can be very severe and it is more non selective than RA and also can affect tendons as well

Both above conditions are an overworking immune system so they are associated health problems. of RA

If you need to know the main charity that deals with our complaint you can e mail PAPAA they have a interesting site

BOB

Hi, I am one of these people who bang on about PsA simply because people assume that it's the milder form of RA, from my perspective it has not been and I am in the middle of a full pelt with both PsA and Psoriasis at the moment, which is why I have gone quiet. If you would like to pm me I am happy to talk off line if you would prefer to, providing you don't mind a wait on answer as I am only looking at odd times at the moment.

earthwitch profile image
earthwitch

Yes, I have noticed. It does seem to me that rheumatologists in the UK prefer to start with an RA diagnosis (or a seronegative RA diagnosis), and only when it becomes absolutely obvious that its something else, does the diagnosis change. The cynic in me says that treatment costs and targets have a lot to do with it. RA has a whole host of relatively cheap DMARDs that can be used to treat it, and they can spend years going through the various combinations before reaching the biologics point. PsA and other spondyloarthritis (including ankylosing spondylitis) has less proven effective meds to try before biologics, plus being that little bit more difficult to "prove" a diagnosis, especially in the case of AS where you really have to wait until there is obvious bone damage in the SI joint before it gets diagnosed. Also, there are NHS targets for treating RA, but not for diagnosing or treating spondyloarthritis, so if clinics want to meet targets, then it wouldn't surprise me if they focussed more on RA, and tended to send folk that they couldn't put in the RA basket straight back to GPs with a fibro or mechanical back pain diagnosis.

Yes, I think it is very important to have the right diagnosis - the treatment IS different, and you won't get the same good results on DMARDs as you would expect to get if its RA. If NSAIDs work better for you than DMARDs, then it very definitely is worth asking whether you could have PsA or another form of spondyloarthritis, especially if your RA diagnosis is being questioned.

FWIW, the actual incidence of spondyloarthritis of all kinds is actually reasonably high. For AS alone, its about the same on a population level as MS, and only a little less than RA. Add in PsA, and reactive arthritis, and I think it is well underdiagnosed in the UK.

in reply toearthwitch

NSAIDs only work better than DMARDs if you have a mild form of PsA, which I believe I had for years but put it down to repetitive strain injury in my fingers and wrist, as I had been typing since I left school. When it became rampant then they did not 'touch the sides' nor even the DMARDs only biologics. The people who I know that have PsA have all had to have biologics as quickly as possible due to the rampancy of the disease.

In addition if it is such a mild disease how come a very good friend of mine died ten years ago at the age of 50 from PsA. Not such a mild disease I think.

earthwitch profile image
earthwitch

If anyone wants a forum that is more orientated to spondyloarthritis forms (PsA, reactive arthritis, undiff spondy, or Ankylosing Spondylitis) in addition to this, there are a couple of really good international ones that have a big member base and more indepth info available - Spondylitis Association of America is one (you can join the forum without joining the group) and KickAS is another. I don't see it as an either/or - this forum is great to get a UK perspective, but my experience of those other groups is that they have a lot more in depth and relevant disease and treatment information, and are much better than a more general Psoriasis group.

norfolkjo profile image
norfolkjo

I think some people with psa were diagnosed ra and now they are differentiated which might contribute to a rise I suppose xx I d love if it were milder but I know my experience is not that sadly. . There is nothing like having sores all over u even on intimate bits as well as the joint pain to make u feel sorry for yourself xx I say I have ra to friends family as just easier xx they are both crappy xc

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