Tags: aches, arthritis, canadian smocking, cats, cholesterol, coffee, crochet, decafinated, doctor, embroidery, GP, methotrexate, pains, Rheumatoid arthritis, Spanish
Well, I’ve been very remiss posting lately, I must say … so prepare for a very long and rambling post – perhaps I’ll put headings on so you can skip to the bits that you might find interesting! A combination of being very busy and yo-yo health – but fortunately, mostly busyness.
Anyone remember the game ‘fortunately, unfortunately’ where you’d take it turns to make sentences beginning with either fortunately or unfortunately, to make up a story? Well I was wondering whether to write an entire blog post like that, as my life seems to fit that pattern quite well right now – but thought it might get tedious, for you and me! Here’s an example though in case you have no idea what I mean:
Fortunately I have been doing a lot of fun things lately.
Unfortunately doing a lot of fun things is rather exhausting.
Fortunately I am, on the whole, sleeping quite well.
Unfortunately my Spanish teacher forgot I only drink decaf coffee and made me two fully ‘cafinated’ coffees last week, and I had a terrible night’s sleep (or lack of it) trying to climb down off the ceiling.
So – here we go with the update on the health front: About three weeks after my methotrexate increase in May I started to feel much better – go methotrexate! All those ‘regular’ niggly aches in my hands and feet were spirited away – I was still getting twinges and some knee pain (my knees probably being the worst affected bits of me) but no stiffness and none of that constant, nagging, draining pain. Hurrah! Unfortunately … sorry, just slipped into it there … it’s now about twelve weeks later and I’m feeling really pretty rotten. If you’re reading this then the chances are that I don’t need to describe that rotten feeling – you either know it only too well or you probably know me and I’ve moaned at you enough already – so suffice it to say I’m just not feeling good!
I’m hoping, and thinking it most likely, that it’s a temporary blip rather than that the methotrexate is ALREADY not doing the job.
On top of that I had my annual cholesterol test recently … hmm … suffice it to say I am now SERIOUSLY on a diet! :-( It’s very boring – actually that’s not really true – there’s a lot of GREAT and tasty food out there that’s fine for dieting, including much delicious fruit – but remember being a kid and having plenty of toys and games and friends, but you’re BORED and you DON’T WANT ANY OF THOSE? Well that’s how I feel right now about peipono melon and strawberries and lovely home-grown courgettes (zucchini) and all the other apparently delicious things in the fridge! I want caaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaake! But fortunately (sorry!) the weight is coming off so that’s encouraging me to avoid the cake and stick to the melon! Also I do NOT want to be on Statins at 46!!
And so to cats – it’s been absolutely ages since I mentioned my cats (or indeed my poor hubby, but he might have to wait for another post!) They are still, of course, a central part of my life (as are you hubby-dear, before you read this and complain) and in fact we may have to rename Enormous Cat as Mr. Handsome, as he has dieted (or perhaps I should say we have dieted him?) way more successfully than his penguin, so far. I should get encouragement from him – he’s ten years younger in sprightliness and joi de vivre, although (like me) he does complain loudly that he’s hungry sometimes! And Tiny Cat 2 has really come on – she’s gone from being a practically feral scardeycat to a real member of the family – she’s even been known to sit on my lap for twenty minute at a time and stay quite happily curled up next to hubby when he’s sat down beside her. (Not often – but increasingly.)
Having fun (and occasionally working)
So … the rest of life: I had a lovely visit a few weeks ago to Bro and SIL’s new(ish) house in the Midlands – and we’ve visited some other friends and had some friends visit us; Hubby and I have been doing quite a bit of wildlife surveying which is fun; I’ve been doing a lot of crochet, trying to get something ready for a competition but I fear it’s NOT going to be close to ready – but on the bright side I did get third prize in our local show for my crocheted St. Edwards Crown last month, so that was nice. I have also been trying out ‘Canadian smocking’ which is fun. Just small samples so far, practising on an old gingham curtain, because that way I don’t have to mark out squares on the fabric! I have a cunning plan for a clutch bag based on this technique – but no hurry … and the Spanish is coming on nicely – although to be honest I can understand my Spanish teacher fairly well but plonk me down in Barcelona and ask me to translate and I’m sure I still couldn’t understand a word! Still – getting better! And in amongst all this fun, fun, fun – work has, thank goodness, picked up lately, so we’re busy there too. No wonder I’m tired!
Phew – sorry that was so rambly – I’m off for a lie down now … although Mr Handsome is trying to persuade me to feed him instead.
Tags: anti-TNFs, ARC, Arthritis Research Campaign, BBC, cells, coffee, cure, cure for RA, Daily Telegraph, DMARD, DMARDs, drug, five years, immune system, injection, RA, research, Rheumatoid arthritis, rheumatology, scientific paper, side effects, trigger, vaccine
Some great news was widely reported yesterday – there might be a cure for rheumatoid arthritis and it could be tested and available within five years. No disputing it, that is great news! But a word or two of caution …
Unlike a drug, this treatment involves taking cells from a patient’s immune system, altering them in the lab and injection them back in to a joint affected by rheumatoid arthritis. However, not only have there been no human trials yet, there have actually been no trials at all. The only work that’s been done so far is on the cells in the laboratory.
The announcement seems a little premature to me because they don’t even know yet whether the re-injection of the cells will cause the ‘fixed’ immune system cells to spread through the body or not.
The injection is likely to cost in the region of £25,000 according to press reports. The cynic in me wonders whether that’s why it’s being billed as a ‘one injection cure’. Because if all it did was halt the disease in one joint, and most RA patients have many joints affected, the cost would be totally prohibitive and perhaps the research would be stopped. According to the Daily Telegraph : ‘The team also hope to find out if the vaccine is effective only in the joints it is injected into, or whether the new cells spread throughout the body.’ So as yet they really have no idea whether it’s a cure or something to help one badly affected joint. And if it affects one joint for £25,000, the ‘National Institute for Clinical Excellence,’ in the UK, (who are the folks that decide whether medication is too expensive to give to patients, and who are often known as NASTY for obvious acronym reasons) certainly won’t be letting us UK folk have this on the NHS!
The BBC’s report quotes Professor Alan Silman, from the Arthritis Research Campaign, who are a charity I hold in great esteem and who are funding this research, as saying that the cells should be ‘reset’ to normal activity, rather than attacking the joints and that ‘The presumption is that they will stay this way, unless the same trigger which is thought to cause the problem in the first place is encountered again. Aye, there’s the rub!!
Not only is this currently nothing more than a presumption, but more importantly we don’t actually know what the trigger is – or I should probably say what the triggers are, as it’s thought that there are many different triggers. So let’s suppose, as has been suggested in the scientific literature, that one of the many triggers is consumption of decaffeinated coffee. If the cell ‘resetting’ is a success and NASTY decides the treatment will be made available an the NHS, then I toddle off for my injection, it works, I feel fantastic for a day or two (and that’s assuming, of course, that it doesn’t have some horrible side effects) and then I have a nice cup of decaffeinated coffee … if that’s my trigger, Wham – flare up – back to square one? I don’t know, but maybe. There isn’t even a comprehensive list of known triggers, so it’s not possible to even avoid them after the injection!
Then there’s the side effect thing – this is, like the current DMARDS and anti-TNFs, something that affects the immune system, stopping it from attacking the joints in error. Again according to the Telegraph article, and they may have got the wrong end of the stick slightly, or I may have, and I haven’t read any scientific paper on this, ‘Using chemicals, steroids and Vitamin D, the team has devised a way to manipulate a patient’s white blood cells so they suppress, rather than activate, the immune system.’ So …where does the immune system go? Is one cured of RA but suddenly unable to leave a big plastic bubble for fear of getting a common cold and dying from it due to lack of immune system? Probably not, because it’s probably very specific cells they’re targeting, but I’d like to understand this a bit better.
Don’t get me wrong, I’m delighted that RA, and cures for it, are being thoroughly researched, and even more glad that there might be a light at the end of the tunnel. As someone said on the NRAS forum yesterday, hope is a good medicine in itself. I’d just have appreciated some slightly more balanced and less gungho reporting.