A reliable diagnosis for Lupus on its way?

February 3, 2011 at 9:41 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 2 Comments
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You may think RA is a hard one to diagnose, and I’ve often heard complaints as to how it’s overlooked by medics and the public alike, but Lupus (or Systemic lupus erythematosus to give it its full name) is RA’s poor relation in this respect. Lupus is another autoimmune disease, but this time with the autoimmune system attacking connective tissue – and of course connective tissue occurs in all the internal organs as well as joints, so it can cause inflammation of all sorts of parts of the body, resulting in a bizarre set of symptoms that is often not diagnosed as one problem i.e. Lupus,  for many years.  I suspect that one reason is that GPs etc. would only recognise it from the famous ‘lupus butterfly rash’ that occurs on the cheeks and across the nose, but according to Wikipedia (and I don’t know where they referenced it form!) only 30-50% of Lupus sufferers ever display the rash at all.  Some research has been done now in America to show that Lupus might be caused by a malfunctioning of ‘micro RNAs’, which are things that white blood cells use to control the function of antibodies etc. This is research in mice, something that a lot of people would find uncomfortable but which I’m not going to get into a discussion about here; from a purely biological point of view, however, diseases in mice show a remarkably good correlation to diseases in humans, and the mice show a consistent pattern of ‘dis-regulated’ micro RNAs when they develop Lupus.

What that means is that, probably ten years or so down the line, if it gets that far*, there could be a simple diagnosis ‘kit’ for Lupus, where it can be clearly and easily diagnosed with a blood test or similar, whereas at the moment there is no such test – various tests can hint that it might be Lupus or some other autoimmune disorder, but then again it might not, but there’s nothing conclusive.

Like rheumatoid arthritis 1) it’s quite likely that there are a lot of people out there who are in the early stages and undiagnosed and 2) with Lupus it’s known that many people are either undiagnosed or misdiagnosed for many years before they are given a diagnosis of Lupus, so a test that is as conclusive as this sounds like it would be would certainly be very good news indeed.

We then have to hope of course that the test itself is not so expensive that no clinicians will actually pay to use it, but that’s another story, and probably one we won’t have to worry about for another ten years or so!

Giving myself a kick up the …

February 1, 2011 at 10:10 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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I’m feeling a lot better at the moment. Exercise obviously is the cure for or ills! (Well perhaps not, but I think it might have helped a bit! Perhaps it’s browsing books that made me feel better!) Anyway, in spite of feeling better physically I woke up yesterday with a major ‘Monday morning feeling’ and a distinct grump on about the fact that we’d had too really gloomy days over the weekend and yet last Friday and this Monday (when I had to work, of course, or in Friday’s case would have been working if I hadn’t been at home with my head under a pillow trying to shift the latest migraine), we had gloriously sunny, spring days.

Then I decided this was not the positive thinking penguin I wanted to be! So I ‘reframed’ and started to think, ‘Hey, at least I can glance out of the window and see blue sky and the promise of spring, even if I do have to work.’  Then at lunchtime I managed to reframe, ‘Oh heck, we’ve gone a bit quiet at work, will we have enough to keep us going?’  to ‘Ooh, goodie, we’re a bit quiet. I’ve got time to go for a nice walk at lunch time and enjoy the sunshine.’ And I did. I only went up and down the high street, popped into a few charity shops and had a browse (got seriously tempted by a knitting machine, but that’s another story)  but mostly just wandered up and down soaking up the sun (in a well wrapped kind of way, given that it’s still February!) but I felt so much better for it, and so much better for seeing the aconites starting to flower, bright yellow splashes of colour that are definitely the heralds of spring round here! (It was the primroses where I used to live, in Devon, but here it’s the snowdrops and the aconites.) Anyway, I’m feeling much better for it – and hoping that today will bring a bit more sunshine and another chance for a walk … although my fears about lack of work were groundless, as a load more has come in! Even so, I shall jolly well make time for a walk at lunch time!

Is Omega-3 all it’s cracked up to be? Well, maybe it is, for arthritis.

May 17, 2010 at 1:52 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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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!

Possible ‘cure’ for RA – this one sounds better than the last one …

April 16, 2010 at 1:01 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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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!

Weddings and wearables

April 15, 2010 at 12:57 pm | Posted in rheumatoid arthritis (RA) | 15 Comments
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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:

Dr. Scholl's - Men's Michael Air-Pillo Gel Velcro Shoes, Wide WidthI’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?

I’m fed up with being a yo-yo!

March 24, 2010 at 10:46 am | Posted in Me, rheumatoid arthritis (RA) | 7 Comments
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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!

No improvement in patient access to RA treatment in seven years

February 23, 2010 at 2:25 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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According to the Management in Practice website , which is a website for GP practice managers, the delay in getting patients proper rheumatoid arthritis treatment is the same as it was seven years ago. I suppose we should be grateful it hasn’t got worse!

Worryingly, to my mind, they say, “The Commons Public Accounts Committee has revealed that patients could suffer damage to their heart and lungs if access to treatment is delayed.” Well I have two things to say on that point. Firstly it’s not exactly a ‘revelation’ by the Commons Public Accounts Committee, but that’s more of a personal gripe about writing style than anything. More fundamentally there appears to be no recognition that patients could suffer permanent joint damage and a drastic reduction of quality of life if access to treatment is delayed. It’s as though ‘heart’ is the magic buzzword – if you put ‘heart’ in your article, at least when it comes to GPs who are forced to be target driven and probably have a big government target about reducing heart disease right now, then people might take action!

Mind you, they say that the average number of visits to a GP is four, before a patient is referred on to a specialist, and blame this on a lack of GP training. I would have thought that wasn’t soooo bad. It is hard to diagnose. It does vary enormously between patients. And it is possible to show symptoms that appear to be RA and then disappear – it happened to a good friend of mine. So I would have thought that an average of three visits (maybe not four) and attempts at less drastic treatment like ‘take Neurofen’ would not be unreasonable. I was very lucky – I had two visits before my referral and the GP spotted immediately that it might be RA and organised a blood test on the first visit. However if I’d been seronegative (negative RF test) then I shudder to think how long it might have taken!

Apparently, according to the same article on the same Commons report, “GPs receive on average only two hours of teaching on musculoskeletal conditions during their training, including minimal coverage of inflammatory arthritis.” I have to say I find that hard to believe, but if it’s true then it’s pretty scary, and it might explain why it’s taking 6-9 months to get people referred.

They also say that there’s a lack of awareness among the public of what symptoms to look for. I’m sure that’s true, and that does stop people going to pester their doctor when they have intermittent pain, but I suspect another thing that stops people going to see their GP is the difficulty in getting an appointment in the first place! But that’s another story for another post on another day …

I see trouble ahead (but then I usually do, don’t I?)

February 3, 2010 at 2:02 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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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?

NICE fiddles while RA burns a hole in the economy and our joints

January 30, 2010 at 12:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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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.

The ramblings of a bewildered and broke Penguin

January 19, 2010 at 11:35 am | Posted in rheumatoid arthritis (RA) | 10 Comments
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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

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