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’
ooh.. interesting.. gold is toxic.. but apart from the sudden death side effect.. which is a bit final i must say!!. its side effects so far seem ok.. but time will tell.. was ok on methorexate for 8 months...., sullphasalazine-- .... hospitalized me... wont touch leflumomide arava with a long pole not willing to try hydroxychloroquine.. for very valid reasons....
in reply to
Hi Ali
Methinks you might have something of a quandary ahead of you! Let's hope you don't run out of treatments!
Lyn x
Oh Lyn. It's all so very frustrating to say the very least. Life is one big long "if only" but I think knowing what I know about you, it is futile to if only, and you won't dwell on it.
Comparing our experience of RA is what hit me the other day and made me stop and shake myself, because I am lucky my body has only just now decided to have a fight with itself, when there are so many good drugs available and I have a better chance of avoiding joint damage.
Very difficult to empathise when I can have no idea what you have been through all these years. But you are a very positive person, you are well armed with information and appear to be as active as you possibly can. it's a blood good job too though isn't it.
So crack open the champagne here's to the next 23 years as sero-positive????
One very good thing is this site would not have been the same without you.
Like the little person with the red bits, or is that your medical chart!!!
Take care Julie x
in reply to
Hi Julie
Yes that's me with my hotspots ... glad you recognised me!!
I don't actually 'if only', it wastes far too many of my energy sources! It's more of a sigh, 'oh, if only'! I seem to have gone through years and years of people telling me what to expect because "you're sero-negative". Blood tests not accurately reflecting inflammation, treatments not working ... "well it's difficult to treat sero-negative". Yet nobody, including myself I suppose, questioned it!
I know the outcome wouldn't have changed as I've had an almost exhaustive range of drugs which would probably have been the same for neg or pos. However I can see I need to start further investigation and research into my newly diagnosed state of positivity
Next stop, GP to get the orthopaedic appointment arranged ... apparently it's quicker this way. Somehow I think there may be a budgetary issue here!
Lyn x
Hi Lyn, yes if only we were diagnosed last week life would be completely different for us. We know its not easy either way but there's so much more on offer now not like years ago when there was virtually nothing.
Damage as already been done to us now and not a lot we or anyone else can do about it. Apart from the surgery route of course, I have just come to terms with the fact that my life of surgery will be ongoing.
I too had many drug changes over the years, sulphasalazine being the first one along with cyclosporin (those great big grey capsules, ahh!) then methotrexate and that's the only early ones I remember.
then came the Anti-tnf's first one I had was the Infliximab infusion. What was so strange about that was that it worked well at first and then when I went in for the third infusion I suddenly had a anaphylactic shock!! that was so frightening, not just for me but for my consultant and the nurses at the time, they still remember it now.
I then went onto Enbrel and the Humira, both of these worked well for 2-3 years but suddenly stopped working for me. As you now I know take Rituximab along with MTX and have done for about 3years, working well so I'm happy. Not as well as it should I'm told but having had so many drug problems and changes I'm happy to stay on it.
We have to be positive and try and live the best life possible, otherwise we would have sunk many years ago!!
take care
mand xx
in reply to
Hi Mand
Yes, you're right, of course. I think we should regard as ourselves as pioneers on behalf of the sterling work the drug companies have done over the last 10-15 years. At least now most people will be able to live a relatively normal life without damage or, worse case scenario, only limited damage.
My only wish is that those newly diagnosed would actually realise they have not been given a life sentence but instead have a disease that can be well controlled. Hence my comment "If only I’d been diagnosed last week ... I would be literally ‘jumping for joy". I'm only ever positive if I'm honest because there's no point being anything else. Knowing about the disease and treatments goes along way to a better understanding of living with a chronic condition.
I think I've said before, RA travels life's journey with me but I insist it stays in freight. I will not have it impinging on my first class status ... blow that for a game of soldiers!
On we go, let's see what delights next week brings us!
What a story, but you did mention the other week to me that there was a chance that people did change, I asked my Rheumy but he said he had not heard that was sometimes the case.
I think when you come to terms wth this it must be a positive as there seem to be more available if you are RH pos.I'm wih julie have a celebratory drink and enjoy life and this glorious sunshine, may it continue or I'm off to meet Gina in person!!!
What? I know something a rheumy doesn't? I must be onto something good (or not!!)! I think the changes usually occur during the first couple of years as the disease settles down. Perhaps in the early stages low antibody levels are insignificant and only picked up as they increase and the disease progresses. This is just me pondering
Treatment options are improved with a positive anti-ccp so that can only be to the good. It will be interesting to delve into the way ahead and possibilities for the future. Bring it on ... and the champagne!!
I'll jump the plane to Faro with you Tricia, I even know the way to Praia Da Luz. Watch out Gina, get the wine chilled, once the sun disappears we will be on our way
Lyn x
Hi Lyn,
I know that you're a positive person, but all that suffering takes it's toll doesn't it If there was a Distinguished Order of Rheumy Sufferers we could make you a 'Dame' - though who would want to belong to that elite group I don't know! It's a cruel disease, infinitely worse before the more recent array of drugs. There used to be a fund-raising advert for MS that said 'MS - it won't kill you, but it can take your life'. A really good way of explaining RA too, I feel.
I know that I'm lucky that Mtx was available when I was diagnosed - tried Salazopyrine first but developed nasty dose of neutropenia and spent 2 weeks in an isolation room in hospital. Rheumatologist said 'we try not to kill our patients' -hmm.
I'm currently sero-negative RA but my consultant checks every 18 months or so to see if I've become sero-positive as he says that it can change over time. I wasn't aware that the treatment options were any different.
I've been assessed for anti-tnf but my medical history (chronic kidney infections + twice had septacaemia) means that it's considered too high risk but I'm managing on DMARDs, tramadol and amitryptyline.
I hope that this change from 'negative' to 'positive' brings you more options
Cece x
in reply to
Hi Cece
Isn't there so much to think about? At least I'm now sero-positive the way is opened up for a slightly different treatment pattern and other options. It's great that your anti-CCP is checked regularly, I don't think this is done as standard procedure, probably on a cost basis and the fact that treatment choices may not change as a result anyway.
Neutropenia is the most awful ruddy thing! It was weeks before anyone realised what was wrong with me, they were baffled. I'd had a fall in the shower (slipped whilst cleaning it!) and ended up battered and bruised. They put the subsequent UTI and chest infections down to me sitting around nursing my tender bits and being generally immobile. Eventually they cottoned on and the methotrexate was stopped. It was months before the infections settled down. Unlike you I didn't end up in isolation although people were keeping a wide berth when they saw the state of me!!
Would I like to be a Dame of the DOR? Hmm ... I think perhaps not on this occasion, but thank you for the thought
Lyn x
Thank you one and all for your thoughtful responses.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
If there was a Distinguished Order of Rheumy Sufferers we could make you a 'Dame' - though who would want to belong to that elite group I don't know! It's a cruel disease, infinitely worse before the more recent array of drugs. There used to be a fund-raising advert for MS that said 'MS - it won't kill you, but it can take your life'. A really good way of explaining RA too, I feel.
Saw my GP today and I could scream!
blood test negative for RA factor. Could I still have RA nonetheless?
Enthesitis? I may finally be getting closer to the answer!
Swollen joints but normal CRP
Absolutely Fed Up All I want to Do is CRY
