Possibly not RA ??!!

Hi all, hope every thing is going well with every one.

I have recently moderate to sever pain in my hands especially in the morning after waking up, followed by permanent burning sensation which lasts for ever to the extent that I can't remember when it ever stopped. I also noticed changes in the shape of the small joints joining the fingers with the hand.

I saw my GP who believes I might not have RA and he asked for re-evaluation of the case.

I did all blood tests again and a X-ray on both hands and wrists.

I don't have anemia - GP said its existence is an indicator of RA

My CRP and ESR are normal - GP said they are typically high in RA

my RF is positive and anti-CCP is also positive at 500 - GP said this is not enough evidence for RA

my X-rays showed mild space narrowing in both hands, this did not exist before starting treatment with MTX and plaquinel - hands were absolutely fine.

GP finally suggested seeing another rheumatologist fora second opinion.

Tired of thinking in an endless circle of possibility, after being diagnosed with RA for almost a year.

Any thoughts?

Hala

8 Replies

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  • I've never heard of anemia being an indicator for RA, and if you've been taking meds then you'd expect your ESR and CRP to have returned to normal levels so I'm not quite understanding what he or she is saying. Anyway, such strong positive Rf and anti-CCP what does he think it is then? What does the rheumy that you're seeing say? As normally it's for a specialist to diagnose not a GP.

  • What on earth is he doing sitting in his GP practice when really he is a professor of rheumatology?? It's so frightening when they say things like that, I would be worried sick about getting my meds stopped or under treatment... Why on earth did he even start thinking this??

    Can you not speak to your rheum niurse for support?

  • If your GP is so sure you don't have RD, have they hazarded an opinion as to what it might be?

    Helix is right - anaemia is absolutely not an indicator of RD. A degree of it is common in all chronic diseases (anaemia of chronic disease) & people with RD can also be anaemic for the same reasons as everyone else - heavy periods, bleeding ulcers, poor iron absorption etc. Not being anaemic means just that - you're not anaemic!

    I'd want to know from the second opinion why you have joint space narrowing, positive RF and anti-CCP. The joint changes are unlikely to be caused by the DMARDs - some sort of process is obviously going on in your hands - maybe you aren't being treated enough??

  • I wouldn't imagine a GP in Egypt would be any different to the rest of the world & overrule a Rheumys diagnosis so a bit confused why he's ordered tests again, it seems odd. Then to say he doesn't think you have RD seems most odd bearing in mind what he discussed with you.

    Anaemia in RD patients isn't unusual but I wasn't aware it was an indicator, certainly not proof as it can be caused by other things.

    That your ESR & CRP are normal is probably due to your meds, seems they're doing a reasonable job on your inflammation & your GP should recognise that it's due to your meds.

    Being positive for Rheumatoid Factor & anti-ccp isn't totally suggestive you'll have a diagnosis of RD but the higher the result the more likely you do & yours is reasonably high.

    The x-ray results show that your hands seem to have sustained some erosion & as a result have become painful. This could be due to RD not being quite well enough controlled or OA.

    Did he not discuss what other different diagnosis you may have? Seems most unusual he wishes you to have a second opinion Hala given the evidence you've provided.

  • My diagnosis of RA was only confirmed a few years into my treatment when my X-rays started to show erosive damage :( I think it's quite common for the diagnosis to be uncertain but treatment is begun anyway to try to prevent joint damage.

  • I'm not going to suggest or hazard a wild guess as to whether you do or don't have RA (I have positive anti ccp and I still don't necessarily agree that I've got RA), but certainly on the CRP and ESR point my levels have always been completely normal right from the outset, even when I was in the most pain my ESR was 9 and my crp was about 1. The rheumies said that a portion of people don't show raised inflammatory markers in the same way that other people do, they have no idea why, but just because your crp and ESR is normal doesn't mean that you don't have inflammation and thus RA. That's what the rheumies say.

    Also, when I made various arguments as to why my symptoms don't fit with RA, they said that genes play such a big part in what symptoms you will or won't show, that failing to show certain symptoms doesn't mean you don't have it.

    My rheumies are relying absolutely on the anti ccp reading in justifying why I should take methotrexate. I'm playing along for the time being.

    But in making your own decisions you should consider the points above.

  • Anti CCP has approx 95% specificity for RA ie if you have a positive Anti CCP it's 95% certain that you have RA. I never have a high crp or esr - even when i had pyelonephritis and a fever! Your GP is not an expert. I hope the uncertainty is cleared up soon xXx

  • Hello. My esr and crp are always normal. My platelets are my indicator of inflammation. I too am rf and ccp postive with pain and some swelling but no doubt on it being RA. I would go for a second opinion.

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