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: fibromyalgia, menstruating, menstruation, pain, periods, R.A., RA, rain, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, weather
I’m baaaaaaaaaaaaaaaaaaaaaack! Don’t suppose anyone missed me (sob) but if you did wonder where I’d gone, I’ve been quiet because I’ve been having MAJOR computer problems at work and major getting my City and Guilds embroidery modules done on time problems at home!
Yesterday I was completely convinced I’d sussed my R.A.! I know there’s a link with the weather and I know there’s a link with hormones. I haven’t kept a diary but I thought I saw a pattern emerging. The pattern I thought I saw was that hormones were in the lead – provided I was menstruating or there abouts then, regardless of the weather, I’d be pretty good. If was in the midst of hot flushes then I would be less good and even worse when it rained.
Of course that turned out to be far too neat and tidy! Today I’m menstruating again (oh joy!), grumpy as hell and full of aches and pains. Aaaaargh. Of course things are complicated by the fibromyalgia, but it all FEELS like joint pain right now (apart from the period-related back ache of course!) A little hard to be sure though.
Tags: aches, cats, enormous cat, fatigue, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
Picture the scene: it’s three in the morning and I’m in pain and wide awake. Tim Piggot-Smith has failed me – for once even his dulcet tones reading David Starkey’s Monarchy: The Beginnings haven’t lulled me to sleep. Neither has a podcast of a lecture from the wonderful Dr. Stuart Lee on Anglo-Saxon History – my other failsafe. I’m at my wit’s end.
Suddenly there’s a crash, a bound, and a superhero comes flying through the bedroom window and lands on the bed with an enormous thump. Yes, it’s The Grey Shadow, feline super-hero extraordinaire, to the rescue. A lick, a purr and I’m already feeling better.
Soon the gentle sound of purring has done the trick and I’m fast asleep.
I wake up at around 5:30 and The Grey Shadow has mysteriously disappeared. My ankle’s in agony. Why? Ah yes – Enormous Cat is fast asleep on top of it. I wonder where The Grey Shadow went? He would have been far too considerate to sleep on my ankle.
Thanks to Wren at The Rheuma Blog for reminding me about this incident with her post on wee beasties! What would we do without them? I’d far rather put up with the discomfort of the occasional sore ankle than not have these nocturnal visits from my superhero at all!This is enormous cat. You can tell it’s not The Grey Shadow, in spite of the general similarity in colour and size. The Grey Shadow wouldn’t be seen dead on a pile of washing!
Tags: arthritis, flare, Let's work together, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), work, World Arthritis Day
It’s World Arthritis Day and this year’s theme is ‘Let’s Work Together!’ It’s got me thinking about how lucky I am to still be in work considering I’ve got this dratted disease/illness/condition, whatever you want to call it.
I’m very grateful that I can still work, in spite of the R.A. It’s been a difficult road to travel, but I feel not nearly so difficult as for those in employment. Yes, it’s “mild R.A.” but when my symptoms are bad it doesn’t feel mild to me! As a self-employed person I don’t have to worry about breaking the news to the boss, explaining why I can’t play golf with the company, or put up with silly comments or lack of understanding from colleagues. I only have one colleague and she’s very understanding … if she’s not then she does a good job of hiding it, since I’m her boss (at least officially – we suffer from role reversal now and then).
There has been some research, sited in the excellent book on Living a Full Life With Rheumatoid Arthritis by Jasmine Jenkins (a delightful lady whom I had the pleasure to meet in Barcelona – Gosh – who’d have thought you could name-drop in the world of rheumatoid arthritis?), that suggests that self-employed people are likely to remain in work longer than those who are employed. If I remember rightly, since I can’t lay my hands on the book right now, it was suggested that this is due to difficulties with employers. On a bad day I wonder if it’s more to do with desperation – there’s no going off sick and still being paid by the company! On a normal day though I’m grateful that I can take small amounts of time off here and there to cope with a flare, and that I have been able to cut my hours back to normal full-time hours from slightly in sane morning and evening and weekend hours that I used to work, without having to justify myself to anyone except myself.
It would be good if World Arthritis Day, and indeed the My Day for RA site, brought some real understanding of rheumatoid arthritis to those who don’t have it but who have friends, family or colleagues who do, to lighten the load of those people in employment who have to put up with R.A. on top of all the usual frustrations of a job!
Tags: arthritis, fatigue, medication, pill tray, pills, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, tablets, tiredness
I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.
When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.
I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’
You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.
I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!
Tags: arthritis, fatigue, fibromyalgia, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), tiredness
One really important positive I forgot to add to my last past was that because I already have RA I’ve been through so much of the crap that other people have to deal with when they first get their fibromyalgia diagnosis! I already know ALL about pacing myself (OK, so I don’t do it so well, but I know all about it), I’ve already learnt to deal with the guilt that comes of telling friends I don’t feel well enough to visit or whatever, and I’ve already learnt to live with the, ‘You can’t be ill – you look fine,’ attitude of people that don’t know me well. Perhaps most importantly, I have learned to tell my loved ones when I feel like death warmed up, and not to expect them to know as if by magic. Recently the importance of actually telling them when I felt pretty good also dawned on me – after weeks of feeling lousy, if I have a good day it cheers me up enormously, so it’s important to share some of that cheer with hubby, my mum etc!
Tags: arthritis, cervical collar, hospital, neck brace, neck collar, neck pain, physio, physiotherapy, RA, Rheumatoid arthritis, shoulder pain
I had another physio session today – a very good one. Although I actually felt slightly worse coming out of the hospital, I feel significantly better now and I’m attributing it, rightly or wrongly, to the physio. Anyway, I mentioned to my physio that back fastening neck braces (aka cervical collars, neck collars etc.) were a pretty stupid idea IMO. She looked rather astonished and then said, ‘Of course! You’re quite right. Well they probably make them … but of course the department will just buy in the cheapest option.’ Yup, that sums up the NHS, but then again, I’m very, VERY glad we’ve got an NHS, for all I moan! There are lots of places on line to buy front-fastening collars. The cheapest one I’ve found is here but there are lots of other options. I shall be buying one just as soon as some of my clients pay me!
Yay, I’m finally getting some physiotherapy on the NHS for my RA. It hasn’t actually taken QUITE this long – I started just before Christmas and this afternoon will be my fifth session … and my physio has achieved a ton in that time … in spite of this week’s flare up! Further good news is that so far she’s shown no sign of the two things I was dreading: Saying ‘I can’t treat that bit of you – only your shoulder and knee were referred’ or saying, ‘Right you’ve had four sessions, that’s your lot.’ Mind you, I’ve also heard rumours about six sessions being the lot, so we’ll see what happens next week!
After taking a thorough history and getting me to go through a range of ‘range of motion’ exercises to assess the issue,and after establishing that I’d actually been referred for the wrong shoulder she was more than happy to agree that if ultrasound had helped in the past it would probably help now, and do some. That’s one:nil to the Dereham physio over the Norwich one! She started off doing ultrasound and some massage and giving me new exercises to do – and also telling me to stop when it hurt. Seem obvious? Not to me it didn’t, having come through the old ‘No pain no gain’ eighties regime!
Then a couple of weeks ago I went in and said, ‘I know I’ve not been referred for this, but my neck is causing major problems’ so she did a thorough investigation of that and then two treatments specifically around the neck area – massage and manipulation. Apparently I have a lot of stiffness in some of the joints in the neck/upper back, which she’s been working on, and apart from the flare up, I’ve seen a big improvement. I’ve also got some strengthening exercises and, as previously mentioned, a neck brace for when things get really bad …although that has issues of its own. (See my post about that.) She’s happy to listen to me when I go in, with regard to what the problems are this week and what needs most work, and she’s also quite friendly and happy to chat about ipods, children, embroidery, home decorating or any number of other fairly random topics while ultra-sounding. (While massaging she’s too busy going, ‘Oh did that hurt? Is it bearable’ etc. to chat.)
It’s slightly difficult to chat as, and this is my only very minor whinge, being an old NHS hospital (which i suspect is being slowly run down until they close it), the physio ward is just that, a ward with curtained couches, not separate rooms. So you can hear the lady next-door telling her tale of woe about how she can’t look after her elderly sister, while a man across the aisle talks about his knee problems, and a girl using traction wonders how many inches she’ll grow by the end of the session … I try not to listen, but boy it’s hard!
Still, all in all I’m very happy … so far. Let’s wait and see if I’m still saying that in a couple of weeks’ time, or whether she’s kicked me out for having too many sessions!
Tags: muscles, neck brace, neck pain, RA, Rheumatoid arthritis
I’ve got a neck brace from my physio, to be used only in cases of absolute necessity, because I don’t want my neck muscles getting even weaker than they already are! I’m using it for the first time today, and I would love to ask the person who designed it why thought it was a good idea to have it FASTENING AT THE BACK!!! I can’t believe I’m alone in that when my neck hurts, my shoulders hurt too, and lifting my arms right up and around to the back of my neck and fiddling with a fiddly bit of velcro is really nor easy! And as the OT said, ‘We must maintain our independence …’ (See the post on my lovely OT here) And anyway, ‘What do you use to fasten your awkward neck brace?’ with the answer, ‘My husband’ doesn’t work if I’m at work when I need to use it.