Date: 19.06.2013
From: Rosie
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Subject: Newly diagnosed and worried
Hi, I'm new to this forum and I'm hoping for some advice support please? I've been experiencing symptoms for just over 2 years and finally have a diagnosis of Inflammatory Arthritis, most likely Psoriatic Arthritis but possibly Rheumatoid Arthritis. I have some psoriatic nail problems and my brother had psoriasis but my rheumatoid factor is also mildly positive which is why they can't rule this out completely. My symptoms are more constant with PSA, but I've been told the treatment would be the same anyway. I've had X-rays and ultrasounds over this time and the most recent ultrasound of my hands showed some 'greyscale synovitis' and these particular knuckles feel bruised and enlarged, this is on both hands. However, thankfully, there is no erosion to the joint. My main pain is hands, wrists, elbows, shoulders and stiffness in feet and ankles. The fatigue is dreadful. I've been told by the rheumatologist that my arthritis is low grade, although I have to say it doesn't feel like it! She also said that with these types of arthritis if there is no erosion of the joints within the first 2-3 years from onset then there most likely never will be. As I so far have no erosion of any joints she feels that I will fall into this 'non-erosive' category. I've never heard of this before as I thought both PSA and RA were always erosive. She has therefore suggested a treatment plan of NSAIDS, monitoring and if any evidence of progressive erosive changes then mtx or sulphasalazine. I have been taking Naproxen which has really helped for about 6 weeks with the pain and fatigue but is wearing off and I'm not getting much relief. I will be seeing my Gp to swap to a different NSAID. My main concern is that I'm not taking any medication to stop disease progression and damage to my joints. I'm 45, have 3 youngish children and work, so I need to be as well as possible to look after my family. Has any ever heard of or know if PSA/RA can be 'non-erosive'. My first year of symptoms I was taking a lot of steroids which could have prevented any erosion and most of the following year my symptoms were in remission. They flared up in February this year and as I'm not taking anything other than NSAIDS it's the first time there has been any synovitis detected in the ultrasound or noticeable physical change to any joint. So I'm not even sure that I would fit the 'non-erosive' profile as there are potential explanations for no erosion. I'm not due to go back to see my rheumatologist until September but I'm feeling quite anxious and alone about what might be happening and whether I need to be worried or should I just trust my specialist more. I don't want to have to take mtx or similar unless I really have to, I just need reassurance that I don't need to take it. Thank you anyone who might be able to help.
Cxx
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Date: 19.06.2013
From: bsk
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Subject: Re: Newly diagnosed and worried
Hi Rosie, I haven't heard of that but I do know I didn't have any erosion in the first few years but I do now! Have you thought of phoning one of the helplines? Arthritis Care have one and so do NRAS . The latter are brilliant and seem to know everything!
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Date: 20.06.2013
From: Rosie
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Subject: Re: Newly diagnosed and worried
Hi bsk,
Thank you for your reply and I'm sorry to hear that you now have erosion ... For you and me, I think!! Yes I have tried nras helpline and they, like you say are fantastic. Their view for RA certainly was that erosion only didn't happen if it was mild, diagnosed early and promptly treated with dmards to stop the erosion. They didn't give me a view on PA but I will try the other helpline thank you so much, Rosie
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Date: 20.06.2013
From: Colin W
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Subject: Re: Newly diagnosed and worried
Hi Rosie , sorry you are suffering , with Rheumatiod Factor being positive it dont mean you have RA , with joint problems you would think that would be the case , same as having psoriasis & the link with PA , the treatment for RA & PA are the same some times its takes a while to get a diagnosis & not everyone gets RA/PA that needs the new strong drugs but most of them a good NSAIDS will control it & when you see the Rheumatoligist in September I would ask to try a disease-modifying anti-rheumatic drug (DMARD) like Methotrexate , to me it sounds a lot like RA , had it a long time myself , symtoms for RA & PA are a bit different
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Date: 20.06.2013
From: Rosie
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Subject: Re: Newly diagnosed and worried
Hi Colin, thanks for that and yes it has been frustrating not getting a diagnosis so at least I've got a partial one even if they can't determine whether RA or PA. They think its more likely PA because the elbow pain is coming from my tendons and not joints and this apparently is more indicative of PA!! Thanks again Rosie
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Date: 20.06.2013
From: Sean
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Subject: Re: Newly diagnosed and worried
Hi Rosie, Welcome to the forum - sorry to hear your issues with getting diagnosed - they didnt really manage to diagnose me for many years. My arthritis (AS) is mostly non-erosive - with inflamation then new bone growth around tendons and cartilage and other tissues being the problem. I have had shoulder problems and sole of my foot in the past which I know can be so painful. In the past I have also had skin issues on my elbows and backs of my legs but has never been diagnosed. I still flare up in my eyes sometimes - which make me look about 10 years older than 47 - which I know is mostly dairy related. I believe my mineral supplementation has helped me a lot - with manganese being particularly important for my tendons and cartilage. I'm currently in pretty good shape and run a fair bit - My story is under "Personal Stories". Hope you can get some relief soon - Sean.
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Date: 20.06.2013
From: Colin W
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Subject: Re: Newly diagnosed and worried
hi Rosie , I get that with several joints with RA , it seems strange you having low RF , not everyone with RF has RA & about 20% of people with negitive RF has RA , atleast the treatment is the same
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Date: 20.06.2013
From: Bsk
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Subject: Re: Newly diagnosed and worried
Hi Rosie, well let's hope your rheumy is right and you have got a type that doesn't cause erosion! I didn't mean to worry you. Everyone's experience can be so different it doesn't always help to compare. You could always ask for a second opinion of course. Might be worth getting another view on things.
take care xx
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Date: 21.06.2013
From: Rosie
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Subject: Re: Newly diagnosed and worried
Hi Colin, yes RF was negative at onset then within a year went to mildly positive ... Don't know what to read into that one!! I also didn't think the tendonitis was restricted to PA but I'm off to GP tonight so will be interested to get his thoughts. Hi bsk you're fine you didn't worry me really, there's no point asking a question unless your prepared for the answer. It's been really helpful to share opinions and experiences with others. I find lack of information or unanswered questions really stressful, I'd always rather have the information, whatever it is, and deal with it than be left in the dark. GP tonight and its not too long til September until I see the big man. Thanks for all your support guys
Rosie
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Date: 21.06.2013
From: bsk
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Subject: Re: Newly diagnosed and worried
Let us know how you get on with GP later.
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Date: 22.06.2013
From: Rosie
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Subject: Re: Newly diagnosed and worried
Well went to GP yesterday and he was very reassuring and agreed with rheumatologist that very often if the disease isn't progressive and erosive in the first few years its likely to stay that way. I'm certainly reassured enough to wait until my appointment with my consultant in September. He changed me from naproxen to celecoxib although so far, like arcoxia, its giving me really bad headaches. It's also not working yet and I'm getting a lot of pain and the fatigue is very bad, I actually went to bed for the afternoon which I just never do with a 7,8 and 9 year old charging around!! I'll give it a few days as it may take a little while to work otherwise back to GP me thinks. Hope you all have a good weekend and haven't been blown away in this awful wind. Roll on some sunshine which would make us all feel better, Rosie
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