Morning!

This is going to be a bit of a ramble, sorry guys, but I do need to get this off my chest so I can go do something other than ponder!

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 not worry about semantics)! 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 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’

Lyn x

hi Lyn,

well that does sound amazing.

i know medications have come a long way this past ten years ... so in turn getting on the right drugs early could have done so much to stem the damage, but i know in your case you've run the whole gammat.

do you know what will be next in store drug wise..?

i'm still very much learning about this dreaded RA and to be honest i prefer to learn as i go along as i know we are all different and there is no given answers.

well keep positive Lyn and really hope there is something that will work for you, my Rheumy Nurse says there is a lot of research going on re meds but i wonder how long that's gonna take.

Suzanne x

my whole life is full of "what ifs" so i prefer "here and now" :)
richie :)

Hi Lyn,

At least it explains a lot!!!! Now all has been revealed, what are the plans (if any) to get you some different treatment now? I know you menioned Rituximab.

Julie xxx

Goodness me Lyn, I never realised that smarties had such an effect that could change one from negative to postive! Seriously, its stunning isn't it that nobody tested for this before now. I didn't know this could happen, does it also work the other way as well?
I know you are not keen to go the Rituximab route, but as you say having the knee replaced could be a real bonus especially if you can get in quickly for it. perhaps then you can stay on the enbrel for a bit.
I hope you have a relaxing weekend and are able to enjoy a stress free weekend.
Best wishes
Sheila

Hi Lyn, No wonder you are reeling from all this. It is alot to take in. I can't really add much more to what others have written, but wish you all the best with everything.

Bevxx

My goodness me Lyn life never ceases to amaze us !

I hope you are able to get the knee op sorted out in early course, so that you can take the best course of action with drug regime

Have a lovely weekend.

Julia xx

Wow Lyn - you are certainly full of surprises! Is it a good thing that you are now sero+? I didn't realise there were different options if you were sero-.

I think if I knew my knee was going to need replacing, I would get the surgeries over with then see if your preferred MTX and Enbrel did the job. It would be good to know that you have something new in the pipeline to try if you need to later. good luck xx Ailsa

As a newbie to all of this, and I dont understand half of what your talking about sero negative etc. I wish you well in what ever choice you make.
My partner has had cancer the last 18 months and we kept thinking that there are people with worse problems than us and kept a positive spin on it, which I am trying to do with my new diagnosis. It's difficult I know, when you don't feel well, just bask in this glorious weather and hope it stays with us for a while longer xx
minxie