What a week … or so

August 26, 2008 at 7:58 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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Things have been jut a tad hectic lately. My mum went in for a planned operation at the beginning of the month. We agreed that I’d stay with her for a night or two when she came out of hospital, and then she should be OK… so she was told.

Well while she was still in hospital I went to visit her and the car broke down … in the car park but not, of course, in a space … I was reversing into a space and it died, completely, no engine, nothing. Well at least mum got a nice long visit while I waited for the RAC! They couldn’t start the car so towed it to our garage, which unfortunately is quite a way from our house, so had to get hubby to pick me up.

Our favourite mechanic fixed it … by tapping a part of it with a spanner! He did warn us that it might go again though … and of course it did. Mum was out of hospital by then, and she lives near where I work so while i was carless for a week (since more than spanner tapping was obviously required!) I was walking from her place in to work, walking back to hers at lunchtime, getting her lunch, then going back in the afternoon, walking back, getting her dinner, doing bits of housework etc. and then falling into bed. Poor hubby had to fend for himself … and fend for the cats too!

I felt completely run ragged and my knee wasn’t too happy about it either!!! Things are getting back to normal now -mum’s very much on the mend, thank goodness, and although I’m still going round (but now with a car!) to do dinners, I’m back home at night (thank goodness!) and she can manage her own lunches. In fact today she walked in to town, her first proper trip out of the house since the op. I’m really pleased for her, as it’s a big psychological step up. She’s being careful not to overdo it though, which is good.

Needless to say really, my arthritis decided to play up something awful over the whole period I was staying at mum’s! It’s now much better. I suppose it’s stress related, although weather may also play a part, as that’s been very up and down, and for much of the time I was away from home it was VERY humid.

A ‘one injection’ cure for Arthritis within five years … well, let’s hope so!

August 15, 2008 at 1:02 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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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.

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