Tags: arthritis, disease progression, joint pain, joints, Omega-3, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Very interesting article in the New Scientist this week – thanks to Maggie for pointing it out – about Omega-3, the promises, the facts, the bits in between … It’s not only about joints, but all the things that it’s claimed Omega-3 can help with, and what proof there is, or isn’t, to substantiate them. It seems that ‘isn’t’ mostly about covers it – but when it comes to arthritis, “There is evidence that omega-3s’ anti-inflammatory properties remove morning stiffness and reduce the amount of anti-inflammatory drugs needed [...] but it doesn’t stop the progression of arthritis and it does not protect the joint or prevent further deterioration. It only dampens down the pain.” Well, I don’t think anyone’s actually claimed that it does stop the progression of the disease, and hey, anything that reduces morning stiffness and dampens down the pain is a plus in my book! Guess I’ll keep swallowing those horse pills then!
Tags: arthritis, cure, injection, medical journalism, medicine, R.A., RA, remission, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
OK, so I really depressed myself with my last post – what a dumb, trivial thing to get depressed about in the scheme of things,* but that’s the way it is sometimes when you’re an overweight dumpy-frump with curled-up feet and possibly PMT!! So anyway, here’s something potentially more cheerful!
According to The Daily Telegraph this morning, there’s another ‘one-treatment cure for RA’ in the pipeline, and unlike the last one, that needed to be injected into every joint, this really is a one-off treatment that could put patients into remission for years or even a lifetime.
To say it’s early days would be a bit of an understatement, but the good news is that, like most RA drugs, it’s a drug, otelixizumab, that’s already been shown to safe in humans because has already been used ” in much stronger doses to prevent transplant patients rejecting donor organs”. If it works, we’re looking ten years down the line – they’re just about to start the first clinical trial in humans. And if it works the researchers have already said that it might potentially only help people in the early stages; “”However, the chance of this happening in patients who have had the disease for a while is not altogether absent,” says Prof John Isaacs of Newcastle Uni. Oh yes, and at the moment ‘one-off’ is not quite as it sounds – you’re looking at between two and five hours A DAY for FIVE DAYS of intravenous injection. Worse than dialysis. But the point is that unlike dialysis that’s it – you’re cooked. Off you go and hopefully no more RA damage. And also they’re hoping that if they can prove it works, they will be able to produce a different form of the drug that patients can administer themselves (and that presumably will not take ten hours minimum).
This is a nicely balanced article in my opinion – and I rarely say that about medical journalism – it’s not full of the hyperbole that the last one injection cure seemed to bring out and it doesn’t say ‘lots of old people will benefit’ as did the last arthritis article I commented on, although Kate Devlin hasn’t been brave enough to try and say what RA is (probably having seen so many medical journalists shot down when they do that!) The closest she gets is “The condition is different from osteoarthritis, the ‘wear and tear’ form of the disease that typically effects older patients.” Well it doesn’t say much, but you can’t argue with it, really. ;o)
This may not be something that will ever help me (because ten years from now I guess I won’t be considered to be in the early stages of the disease, even if it stays mild), and it probably won’t help you if your’re reading this blog, but anything that really has the potential to ‘cure’ RA (and obviously it won’t undo any joint damage that’s already taken place, but if it stops further damage – great), has got to be good news – and especially good news if you have RA and also have children!
* Not that I’m suggesting your wedding is trivial, Mrs Mooseface!
Tags: aches, arthritis, clothes, comfy shoes, feet, neck pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoes, stress, tiredness, wedding
I have a wedding to go to in August – I’ve mentioned this once or twice before! – but what am I going to wear when I can’t wear ‘nice’ shoes?
I get the feeling (probably erroneous) from my mum that she and other family members have been discussing how to make sure Polly doesn’t look too awful for the wedding. <Sigh> Shoe-wise I really can’t wear the ugly contraptions that are my everyday-wear, but I want something deep and wide enough to fit my orthotics, closed-toed so I don’t feel self-concious about the RA side of things and that doesn’t look like this:
I’m sure you can see why!
Thanks to my ‘interesting’ body shape it’s a sod to find trousers that fit properly so the obvious trouser-suit option probably isn’t a serious option … although I suppose I could alter it … and anyway, it’s going to be summer, so those kind of shoes are going to look wrong with ANYTHING! And I don’t want to look like this:
(With apologies to LimeGreenSquid for nicking his picture. If you object, let me know and I’ll take it down but it’s just soooo perfect!)
Since methotrexate’s magic weight-loss effect seems to have lasted a mere two weeks, I suspect I won’t be losing a few stone before then and presenting a sylph-like figure either, so all in all I’m a bit fed-up. There’s no pleasure in clothes shopping when you look and feel like this and I’ve never in my life had pleasure from shoe shopping – so while I’m really looking forward to the wedding, the preamble is worrying me slightly.
Pumps or flat Mary-Janes won’t fit the orthotics, but at least they’d be flat. Maybe that’s the way to go and a day without orthotics might not hurt toooo much. (I can see the steam coming out of hubby’s ears when he reads this, but sometimes a gal’s gotta do what a gal’s gotta do!)
Whatever I end up with it has to be flat. I don’t fancy spending the week after the wedding in self-induced vanity-related agony!
Bright ideas anyone?
Tags: aches, arthritis, flare, flare-up, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress, tiredness
On the plus side, at least a yo-yo goes up as well as down! I’ve had another mini-flare (fizzle, floret?) since I last posted, which is why I’ve been so quiet lately … well, that and the fact that work has been insanely busy lately. I rather strongly suspect the two are connected!
I have posted before, once or twice on the importance of pacing yourself and a week or so ago I gave a great demonstration of exactly how now to do that! Worked long hours, worked part of the weekend, ignored the warning signs, took paracetamol or rubbed in magic herbal rub stuff and just kept on working … and of course woke up one morning almost unable to get out of bed. I did get out of bed … still had deadlines to meet, but came home early in a LOT of pain.
So, what would a sensible person do at this point? Take some painkillers, go to bed and have a bit of a snooze probably. I thought, ‘Well, I don’t feel well enough to work but I still have all this City and Guilds embroidery stuff I need to do, so I’ll go to bed with some research books for that …’
Eventually I reached a point where I HAD to go to sleep, but was still trying not to as I thought that would mean I wouldn’t sleep at night. I got to the point where I realised that I’d need matchsticks if I was going to keep my eyes open and gave in.
At this point I was still in a LOT of pain but did drift off to sleep … and woke up an hour later feeling fine! I know sleep is important, but that’s a really extreme example! And I did sleep well that night too. I must have been really sleep deprived and not even realised it!
Mind you, waking up with five to ten hot flushes (flashes) per night is not exactly helping on the sleep front.
Still, things are looking up – work is now steady (which means that I’ll be panicking in a week or two that there’s not enough), apart from one odd twingey pain in one knuckle I’m not bad on the RA front … the yo-yo is on the upswing again … and will hopefully sit at the top for a while at least!
Tags: aches, arthritis, computers, computres, exercises, flare, joint pain, neck pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress
I’ve got two different rather odd pains to add to the usual mix at the moment! One is a burning pain that I get intermittently in my spine, a few vertebra down from my neck. It’s not too bad, just a bit odd, a bit burny and a bit tingly. Bizarrely, my physio thinks this is a sign of a bit of stiffness. Does anyone else get stiffness manifesting as burning?! Well, she’s given some exercises for flexing the upper thorax, and if they work then I guess she’s right.
The other one is that, having found ultrasound fantastically helpful for ages now, I’m suddenly finding it incredibly painful on my acromioclavicular joint. (Excuse my showing off my knowledge of joint names – it took ages for my physio to teach me this one and I rarely get the chance to use it … it’s the little insignificant (until it hurts) joint between the shoulder and color bone, right at the front.) It starts off alright and then it very quickly gets incredibly sore and painful. Physio says she’s come across this happening before but she doesn’t know why, and she wonders if it’s just a bit more inflamed than usual.
I hope it’s NOT more inflamed than usual. Did I speak to soon about averting a flare? Today certainly didn’t help on the stress reduction front – all clients want their work now (if not last week), and one thought I could proofread 90,000 words in two weeks. Well, I could if I had nothing else to do … grrrr… Oddly enough I feel more stressed now with both computers working than I did yesterday with both computers not working. Does this say something about computers, I wonder?
Tags: computers, flare, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, Ulric Computers
As someone in the office said today, ‘I love what they do … I just wish they did it better’. I had an unbelievable computer day yesterday. My work computer finally died. We won’t go into the fact that I’ve been saying ‘the C drive’s dying’ for a couple of months and the IT guy’s been going, ‘Oh no it isn’t …’ Suffice it to say, it did.
After one HELL of a day I went out for a very pleasent evening of sewing and chatting with the local quilting group (where I don’t quilt but do sew and chat), came home and thought ‘ better check my email’ … so I turned on my laptop and it broke. Honest – just like that. The on button became an ‘in button’ – permenantly pressed in and fallen down inside the computer.
I really thought that was the end of my computer, but I’d gone through stressed and out the other side yesterday and I was, extraordinarly, completely calm! I just decided I didn’t have room or energy to worry about anything else and what would be would be.
I did think all the stress was bringing on a flare last night, but it hasn’t happened – whether that’s because of my determination not to get stressed about this latest thing and to calm myself down, or whether it was never going to happen anyway I shall never know.
Anyway, to ‘cut stories long and short’, I phoned the local IT shop this morning, explained the situation, got a very poor prognosis but ‘bring it in and we’ll look at it …’ I did, he did, he jammed a screwdriver in a place I wouldn’t have dared tamper with and yanked off part of the top and then stood there going, ‘But … but, but, but, but… but …’ interspersed with ‘That’s not supposed to be able to happen …’ and ‘In all my forty years in the business I’ve never seen anything like this …’
Astonishingly the story has a happy ending – or perhaps a happy middle as it’s not totally resolved yet. He showed me where I needed to apply some superglue (of all things!) and then how to put on the bit he’d yanked off, and showed me that the laptop still works! Woohoo! He didn’t charge me a penny and even said if I was nervous about putting the bit of cover back on I could bring it back in and he’d do it for me. That’s customer service for you – and I’ve never even been a customer in there. But you know what – if I want a PC in the future, that’s the first place I’ll look, for sure! A ‘big shout out’ for Ulric Computers!
I shall leave hubby to do the supergluing – feeling far too fumble-fingered after all that, although really I’m sure none of it was anything I did!
Tags: arthritis, diagnosis, occupational therapist, OT, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.
However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?
It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’
I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?
Tags: arthritis, blood test, doctor, health insurance, predictive test, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Apparently a simple blood test could predict RA years before symptoms appear. Now this could be a great thing – it could mean that in families where RA is known to be prevalent doctors could test those not yet showing symptoms and then keep a special eye on anyone who tests positive, to make sure they’re diagnosed as soon as symptoms start to appear, and treated accordingly. (I say in families where RA is prevalent because I can’t see it becoming a standard test that everyone receives, like TB used to be in this country.)
However, I can also see problems. One problem is that any test can be overly relied upon. I’d put money on it that if they’d tested me I would have come back negative, since my symptoms even now are so mild and my RF test result was so low (although positive … just…) Another problem is one that rears its ugly head almost any time such tests are mentioned … although oddly The Telegraph seem to have missed a trick this time in not mentioning it. It’s not great from a health insurance point of view, is it? Or rather it’s fantastic from a health insurers point of view. They just need to insist anyone they take on is tested first – if you’re positive, ‘We’ll insure you for anything except rheumatoid arthritis …’ Can’t you just see this one coming?
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, broke, cats, fatigue, joint pain, methotrexate, Middle-sized cat, money, MTX, NASTY, National Institute for Clinical Excellence, NHS, NICE, occupational therapist, OT, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress
Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you, m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.
Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.
Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.
Hey ho – it’s only money … not as important as health.
I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.
Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and