Rheumy appointment - am I cured!?

[Tuttlebees]

Saw rheumy this morning expecting to be put on hydroxy q as sulfasalzine and methotrexate failed, tho steroids work wonderfully!

He has decided that as my inflammatory markers when off the steroids are normal (they always have been as I am seronegative for RA) that I must be free of RA now. He has told me to stop the steroids and come back in three months as any pain I have is probably osteoarthritis in my fingers. When I said I have the pains in my shoulder joints, knees and spine, none of which have been examined or x rayed, he said to wait and see. Have to say i was very fuzzy in the appointment as have a bad cold and could not be bothered to argue but has anyone else seemingly been 'cured' of RA. If so, fantastic.

[Hidden]

Hello

I have Psoriatic Arthritis and that can have a negative result, sometimes a scan will be the same and Xrays are also non conclusive.

They know the condition is there and they pick up Osteo Arthritis. With me my condition remains active and will flare, my condition also effects the tendons and again shows when it wants to.

The tests that are not showing most probably show next time you visit.

Good luck

BOB

[Angela123]

Hi. You could have polymyalgia instead with shoulder & knee pain. This responds immediately to low dose steroid treatment. My RA has morphed into polymyalgia and I am only on prednisone now. I guess when you come off it you will know if the pain returns. Good luck.

[earthwitch]

Has anyone considered spondyloarthritis? Either psoriatic arthritis, ankylosing spondylitis, or just undifferentiated spondyloarthropathy? All of those will respond to steroids, and with only minimal if any response to DMARDS (though if you have a lot of hand problems that can respond to MTX). Also all of those are seronegative, and a lot of folk show absolutely no changes in ESR or CRP (inflammatory markers). While the hallmark for all of these is inflammatory back pain (less so sometimes in PsA) you can also get enthesitis in just about any joint. Enthesitis is inflammation at the point where tendon joins onto bone, rather than the synovitis that is more common in RA (inflammation within the joint)

You say you have back pain, so it is possible. If you check out the signs of "inflammatory back pain",(on the nass.co.uk website, or just google it) and if you tick the boxes for that, then definitely ask for a second opinion, but from an ankylosing spondylitis clinic or specialist.

Spondyloarthritis is definitely a lot harder to diagnose than RA, but unfortunately a lot of rheumatologists (and most GPs) just aren't aware enough of the subtle signs, and far too many people (especially women) seem to end up with misdiagnosis of fibromyalgia for years before they finally get diagnosed with spondy.

[caggy]

I was told once you have it you will always have it. I thought I was feeling so much that i must be healed but I was told it was hit aggressively because i had it aggressively. But you have given me hope. Surely one day someone will be healed completely and the World will know RA IS CURABLE? Hope you stay well.

God Bless

Carol

[Shell1967]

Hi I'm very pleased for you that steroids work for you,I am confused as I'm sero negative and have high inflammotory markers,its only since I've been on methotrexate that it has gone down.its worked wonders for me personally.hope your results are still good on three months take care michelle x

[mistymeana]

Hi Tuttlebees. Frustrating isn't it? I was miraculously cured after 20 years at the end of 2011,despite having asked to be re-referred to rheumy as meds no longer working as well. Was told it was all down to fibromyalgia as my bloods have never had raised inflammatory markers - had been told it was sero-neg RA. Have since seen 101 different specialists to explain away the non-fibro-symptoms and due to see some more soon. Osteopenia discovered and given calcium and vit d and odd "fibro" pains and wooly-headedness miraculously disappeared. Still got original symptoms though. I'm beginning to wonder if there's some hidden target within the NHS to change diagnoses where RA blood markers aren't present to reduce the strain on rheumy departments as I'm reading a lot of posts of this nature. Hope they sort you out soon x

[Lukaduka]

Hi,

I was diagnosed almost a year ago and am on MTX and Hydroxy. I have NEVER had raised inflammatory markers and I am seronegative. My lovely consultant said my anti ccp at 417 along with mild synovitis (hands and feet) on an ultrasound scan and symptoms, were enough to be conclusive with the diagnosis of RA. Have you had an anti ccp test? If not I would push for that if your symptoms return. Good luck

[Lukaduka]

oh and forgot to say I have had 3 steroid injection at intervals all with an amazing effect.