Reality check?

I was at the busy biologic clinic at the hospital today, along with a huge number of others being followed up or hoping to start on one of the anti-tnf drugs. I was there for a follow up, we debated whether my injections are working or if I should swap to try a third biologic - the decision was to keep going for a few months as there have been a few slight but good signs of response. I was very happy with the consultation, I said what I wanted to, asked my questions, felt listened to, understood what the plan is...all good.

However, I am perplexed.

Apart from a couple of others, it seemed that everyone else in the clinic (including the new biologic patients) was walking with a normal stride and normal or near-normal gait, sitting down and standing up without hesitation, pushing doors, standing in queues, taking off coats... and then there's me, rolling gait, short steps, walking slowly, shoulders and hips screaming, ankles and knees giving way, in pain and wincing at everything I did.

Don't get me wrong, I'm delighted for everyone else, but is there really such a difference between how this disease and the medication affect us? People talk about flares but I don't know what that feels like, my inflammation has never subsided so I've not known life without 'flare' for 3 years, only progression and unremitting pain. I hear some of you talk of exercise, walking the dog, going on holiday - all far off dreams for me.

I've had a huge wake-up call today, I think I'm a bit shell shocked. My occupational health doctor told me I was at the 'extreme end' of this disease, I don't think it had sunk in until today what that means.

Or, am I being a drama queen?

10 Replies

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  • Hi Sallaway very sorry to hear that you are at the extreme. RA it seems is pants. For me i am still working but oh so exhausted no energy to do anything else lol. hopefully the biologic will improve your symptoms in time. best wishes to you xx

  • im hoping for a biologic but i know they arent always a "miracle cure" At home in agony so will give Any thing a try XX

  • I think I'm at the opposite extreme to you in that I can do everything normally also now. It seems you are just one of the extremely unlucky ones with unremittingly aggressive RA. Sorry you had this harsh reality check though - you aren't being melodramatic at all.

    Bot much consolation but you have at least helped me to realise, once again, that I'm not the only person with RA who appears completely normal. I'm actually having a drug break just now to see if its gone away because I feel that I'm far too normal to have RA. But then I don't know anyone personally with RA apart from Cathie on this site - and our rheumy clinic is in a small hospital sited in A&E so impossible to know what anyone is there for.

    I imagined everybody who qualified for biologics would be stumbling and pain racked too but at least it shows these drugs must work brilliantly for some. Here's hoping that you will be one of those people who looks far too well to have RA sometime in the near future too. Tilda x

  • Not not bot!

  • No way are you a drama queen, this can be a truly horrible, horrible and painful disease. And so sorry that you're having such a rough time. The stats seem to vary a bit, but it does seem that there are 5 to 10% of us at either end with either very mild/controllable or very aggressive RA, and the rest of us are somewhere between the two. It amazes me how variable this is, and also how much it can vary over time. I'm at the good end, with an RA that so far seems to be controlled with drugs. and most times you wouldn't think there was anything wrong with me (unless you popped in first thing before I'd shuffled into a hot shower to get me moving). I have little daily aches and pains, and some days like today that are unpleasant, but those days aren't that common any more. And when I look back at my pre-drug self, unable to get out of bed without help, in such pain all the time and unable to get a night's sleep because of it, it makes me practically squeak with glee that I've responded so well to the drugs. And it's such a shame that you haven't, because when they work they are fantastic, so I really hope you find one that does it for you too. I'll cross my fingers for you, and be hugely thankful that thanks to the drugs I can! Polly

  • Well perhaps the people at clinic seem normal ish because the drugs are working? I had to be quite ill to qualify for anti tnf and it took a while for things to improve. And after about 10 years I'm in the process of discovering whether the meds have turned off the disease for a good while or what. I do hope they start working for you, but remember it may take a while.

    Xx

  • When I was put onto Hurmia I felt almost normal in the first month of taking it. The first thing that improved was that I woke up not still feeling shattered. Then over the next month the swelling in my hands etc went down along with my DAS score and I felt like the person I once was. This lasted 12/18 months before I caught a bug and the RA gradually returned so my DAS score increased and I was taken off it at Xmas. Now I have just had my second dose of Rituximab which the paperwork says can take upto four months to show any improvement. Before the Hurmia I tried 4 drmads then ciclosporin but I was not offered a second biologic injection after it started failing.

  • I just think RA affects people in many different ways. About 50% of the time I lumber about like a zombie and get some sympathy as a result but my very uneven gait is not a huge problem for me as my damaged joints don't usually hurt too much at all. You'd probably notice the swelling on my left hand, non-RAers don't - yet the deterioration in both my hands is the thing that worries me most - seems quite quick & is getting painful too which is unusual for me. Any worse & it'll be difficult to drive, bathe myself, get up from a sitting position or use a stick or crutches etc. I still use my hands normally if I can - but for now I kind of ration their use if that makes any sense!

    What I'm trying to say is that anyone meeting me for the first time would not be able to get an angle on my RA just from looking at me. Both my Rheumy & the Rheumy nurse have said that anti-tnfs may be necessary if the next DMARD fails ..... perhaps I'm just lucky with my hospital but I think that possibility has been raised mainly because of the speed at which the disease has attacked my joints. I don't have much pain & fatigue is not a big issue either. But nonetheless I might need to use a wheelchair fairly soon unless something slows the disease down better than mtx has done.

    You hear so many stories of people being denied anti-tnfs - the DAS criteria are iniquitous in my opinion - that it's good to hear that some who at least look all right are getting Biologics. I don't really know whether prevention of serious disability is cost effective for the NHS - although you'd think so - but if the NHS doesn't aim to achieve that then I honestly don't know what it's for.

    It must be horrible to hear that you are at the extreme end of this disease. Even if you kind of knew that already there are times when such words just hit home & it's really hard. I so hope that the Biologic you are on currently does start to work much better for you or that, failing that, the next one transforms things.

    Luce xx

  • Hi, I know exactly what you mean. When i was first diagnosed 12 years ago you would never have know i had it and i remember the nurse telling me a few years later that she though i would be quite severe and over the last few years my walking has got very bad although it has improved with being on rituximab. It is such a variable disease but they do say people now should not be as badly affected as they were years ago because of all the new drugs. Good luck xx

  • Yes there is a huge difference both in disease, and in response to biologics. I do know quite a few people though who have stopped a biologic thinking it wasn't doing anything much, and only later realised how much difference it had made. Its a difficult call though - on the one hand you don't want to put up with a medication that isn't doing enough, but on the other you don't want to give up too early.

    One of the big differences in how people look and walk will be in the amount of permanent bony damage they have. No amount of biologics is going to be able to reverse severe physical damage, and it could just be that biologics just didn't enter the scene for you until a bit later than for those other folk. I think the best indicator really is how much difference you feel it has made.

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