Well, what a turnround! Not sure whether to be shocked or whether I should actually have seen it coming. I suppose I just accept the inevitable as yet another unexpected change along the path of the Rheumatoid journey.
I was diagnosed with sero-negative RA 23 years ago, aged 31; the Rheumatoid Factor showed no antibodies present and of course, back then, anti-ccp testing was not available. The diagnosis was made from presenting symptoms, severe joint inflammation, tenderness, fatigue, anaemia and much weight loss.
I was given the ‘usual’ available treatments of the day, chloroquine, high dose steroids and anti inflammatories; all in place to bring the symptoms under control. It took the edge off an illness that left me not just housebound but very incapacitated, unable to walk barely able to move. My weight plummeted by three stone from a fairly healthy nine stone. After two years or so I managed to pull round from the worst of the disease but not without having sustained considerable joint damage to both feet and both hands/wrists on the way.
Since then it’s been a mish-mash of ‘try it and see’ treatments; numerous anti-inflammatories (most didn’t touch it!), gold injections (highly toxic and rarely used these days), sulphasalasine, Hydroxychloroquine, Leflunomide (tried twice), Methotrexate (tried twice) and Infliximab ... all failed! They didn’t try Azathioprine and Ciclosporin because I was past the point at which these would have been of use anyway. Prednisolone has been the main stay throughout and Enbrel has worked well combined with Methotrexate. Last year Methotrexate gave up causing a load of problems en route! Now the ruddy disease runs its own course.
The rheumatologist is now concerned (or perhaps that’s just me!) about where to go from here, sero-negative makes treatment options limited. But, she has a brainwave (not what I would call it exactly but heyho)! Let’s do an anti-CCP test ... why not indeed nothing to lose!
So, today my status changes, having slept, or rather pondered overnight, on it. I’m now sero-positive, a whole new ball game. I can’t turn back the clock (even with my magic wand!) but I wonder why this was never checked when the anti-CCP test first became available? My RF is still only just bordering on weakly positive (despite high anti-CCP which was done at the same time) which kind of suggests that I may well have been sero-positive all along. Perhaps it wouldn’t have made any difference to the inevitable outcome, who knows?
On we go, another day, a sunny one, the prospect of knee replacements, ankle surgery, hand surgery and perhaps Rituximab. If only I’d been diagnosed last week ... I would be literally ‘jumping for joy’