Tags: glasses, hydroxychloroquine, optician, optics, short sighted
(Apologies to Johnny Nash!)
I’m on hydroxychloroquine, which means I’m supposed to have an eye test every year – but I forgot and the optician forgot to send me a reminder!
Then a vague concern that my eyesight might not be as clear as it ought to be, combined with being unable to remember when I had my last eye test made me go and check with the optician, who is handily just down the road from work.
And the outcome is – I have glasses – first time ever – for distance vision i.e. basically driving. It’s slightly concerning (to me, but not to the optician, so it must be OK really) how much clearer things are, considering I only had the vaguest inkling that I might have a problem, and especially considering that two years ago (my last eye test) I didn’t have a problem! If I look at things without the glasses they don’t appear blurred – but then I put them on and they’re suddenly incredibly clear!
I suppose these things just creep up on one – the eye-sight deteriorated pretty gradually over those two years, and it’s only a very light prescription I have now, but the difference is quite extraordinary.
I’m getting used to them – or at least I’ve now stopped having hysterics every time I catch sight of myself in a mirror or shop window!
Tags: arthritis, consultant, DMARD, doctor, hydroxychloroquine, joint pain, methotrexate, MTX, National Institute for Clinical Excellence, NHS, NICE, NRAS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!
Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!
Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.
And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!
So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.
Tags: arthritis, consultant, hydroxychloroquine, nurse, Rheumatoid arthritis
OK, that may not be a general rule but it seems to apply to mine! I had my first appointment with the ‘rhuemy nurse’ today – a.k.a. Rheumatology Nurse Practitioner – a very nice lady who kindly sorted out my next consultant’s appointment (he’d forgotten), gave me a letter for my GP asking them to continue prescribing the drug I’m on (hyrdroxychloroquine) because he’d forgotten, and gave me the hospital’s own rheumatology support line number because … he’d forgotten.
Well, I suppose the important thing is that he’s good at knowing whether people have rheumatoid arthritis or not, and what to do about it – admin is for us lesser mortals.