Niggles and Grumbles

February 13, 2013 at 10:02 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 6 Comments
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I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!

I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.

It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)

At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.

Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.

A new drug target identified for RA

January 31, 2013 at 10:12 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 1 Comment
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A protein called IRHOM2 has been identified as a possible new target for drugs aimed at treating RA, and could be useful for those who do not respond to anti-TNFs or even eventually replace anti-TNFs altogether. The full article on IRHOM2 can be found here, but here’s a short summary.

TNF or tumour necrosis factor has a useful purpose in the body; it is a signalling protein and it signals the body to produce a protective inflammatory response. Thus if a part of you is infected, TNF starts the process of inflammation, which takes immune response cells to the appropriate area in the blood, and they start to attack the disease-causers. In this case inflammation is a good thing.

However, when too much TNF is produced, immune cells start to act on things they shouldn’t, like our joints – leading to RA.

Anti-TNFs attack TNFs directly, and do a mighty fine job for many people, but they are toxic and can have nasty side effects.

IRHOM2 is a protein that helps to release TNF from where it sits harmlessly and inactively on the surface of cells, so attacking IRHOM2 should have the same effect as attacking TNF – reducing in TNF release and therefore reduction in inappropriately active immune cells, and so reduction in RA symptoms.

It is hoped that drugs targeting IRHOM2 would be less toxic, because they will only block TNF release from the specific cells that contribute to joint damage, and they could be an alternative for those who don’t respond well to anti-TNFs.

There is, of course, a long way to go. This is just the identification of a possible target. The next step is to find something that will actually block IRHOM2 and be safe to use in patients. Then there will be the long, slow plod (quite necessary for safety reasons!) through clinical trials, with no doubt a few failures along the way – but some years down the line this could be a real breakthrough. Let’s hope so!

 

p.s. I do hope this makes sense! I’m really, really tired and I haven’t had hubby proofread it yet!

Why are three-quarters of RA suffers women?

January 12, 2013 at 6:03 pm | Posted in rheumatoid arthritis (RA) | 5 Comments
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Well, all those of us who suffer from RA and/or are women will already know that it’s not because we’re a bunch of winging Minnies, but until recently, although a genetic link was suspected, it had not been found.

Professor Alan Silman, medical director of Arthritis Research UK, said: ‘This is the first time that a genetic association has been established between rheumatoid arthritis and the X chromosome. This could provide a useful clue in helping us to understand why rheumatoid arthritis is three times more likely to occur in women.’

It was reported late last year that among the 46(!) genes that seem to be linked to people getting RA, some have recently been discovered that are on the X chromosome. Now both men and women have X chromosomes, but while women have two X chromosomes, men have one X and one Y chromosome instead, and the genes don’t occur on the Y.

This is all part of a long-term study from the University of Manchester (UK) and the genes on the X chromosome are among the 14 found towards the end of last year.

Professor Jane Worthington, study lead based at the NIHR Manchester Musculoskeletal Biomedical Research Unit, said: ‘This groundbreaking study brought together scientists from around the world and involved the use of DNA samples from more than 27,000 patients with rheumatoid arthritis and healthy controls’ She added, ‘We observed remarkable similarities with genetic markers associated with other autoimmune diseases,’ which is an interesting, but perhaps unsurprising finding.

The intention behind all this work is that it will lead to new ‘genetic therapies’ – drugs that can target certain genes and switch them on/off as appropriate. Let’s hope they won’t be too long in coming!

Healthline Blog Awards – never mind me, vote for Rheumatoid Arthritis Warrior!

January 11, 2013 at 6:03 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
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Good news – there’s a rheumatoid arthritis blog currently in the top FIVE of the Healthline blog awards. The bad news? Well, I could say, ‘It’s not me’ but hey, I post a few times a year and witter on about biscuit making, so I think Kelly at Rheumatoid Arthritis Warrior, who really does work at making an informative and blog for suffers, and increasing awareness of RA, deserves the kudos more; no, the bad news is it’s not number one … yet. So please do go and vote for her!

And do bear in mind that while you’re at it, you can vote for me too … and all my online ‘mates’: Wren and Andrew and Carla and all the folks in my blog roll; because you can vote for as many people as you like each day, although you can only vote for an individual once a day!

And if you have an RA blog with a handful of votes, like me, and you know you’re never going to get to where RA Warrior is, why not get behind her as well and get your readers voting for her … or her and you! :-)

How do I not overdo it tomorrow?

January 2, 2013 at 10:33 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments
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Today was my first day back at work – knee flare seemed to be pretty much over: the swelling had gone right down, it didn’t feel terribly hot, but it was achy now and then. Hurrah.

However, now the other knee had started to ache – RA, or just a reaction to me walking ‘funny’ because of the left knee flaring? I don’t know – but to add to the mix, today being my first day back at work meant it was also the first day since the holidays where I haven’t spent a significant amount of time with my feet up – and I’m really feeling that this evening, as I sit here typing with an ice pack clamped between my knees, and the heat pack waiting for me in bed!

Here’s the thing though – we’re moving offices tomorrow!

Fortunately hubby has the day off and has been volunteered, slightly unwillingly but with good grace, to be my feet, and the facilities manager in the building is also going to help us lug stuff, and then my two colleagues are both fairly fit … so hopefully I can pull out a conductor’s baton from somewhere and just direct operations!

Knee flare

December 29, 2012 at 11:22 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 6 Comments
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Well, whadayaknow? A knee flare turns out to be some kind of strange ‘dance’ move: you can see it here. Unfortunately it’s also what I’m having one of right now …. I’m dancing too: from the freezer to the microwave and the microwave to the freezer … mostly on one leg.

It started on Boxing Day evening – that’s Wednesday for those outside the UK! Just mild stiffness going upstairs – didn’t really think too much about it. Progressed to serious stiffness Wednesday morning which I assumed would pass of during the day. It didn’t. It got worser and worserer. By Wednesday evening it had started to be painful as well as stiff. I took paracetamol and grumbled.

Thursday my mum was doing a lunch for us and some friends. Splendid meal, good company but my sociability somewhat dampened by knee pain. That evening Mum asked if I did ice-packs or heat packs? DUHHH! Why oh why do I always forget those things?!

Pretty much since then I’ve either had an ice pack or a heat pack on it, or I’ve been moving around on it. It makes a huge difference. I can’t believe how stoooopid I am sometimes! But on the bright side, at least it’s starting to mend – or if it isn’t, then at least I’m starting to feel better.

Shoulder injection has worked … a bit …

November 7, 2012 at 9:32 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 3 Comments
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When I had that shoulder injection I was finding it very hard to pinpoint exactly where the pain was, but I know it was kind of ’round the back’. Well … the pain round the back has gone, the mobility is improved but not great, but now I can exactly pinpoint the pain that remains and it’s to the side/front! I still can’t lift the shoulder much above the horizontal.

I went to see my GP about it last week and she’s put me forward for a scan. I was rather hoping for another injection but she says it’s too soon as, since there has been some improvement from the one I had, it should still be working away and might start to improve the other bit too. I rather doubt that, but she’s the doc, so we shall see!

The other thing she said was that if they do the scan and can see the exact spot that is inflamed, they can do the injection there and then and be sure that it’s in just the right place. And being the NHS, by the time the scan comes through I will certainly have left enough time between injections!

So for the moment it’s a waiting game … again!

In the meantime I have my second cold of the winter, and it’s not even supposed to be winter yet. <sigh, achoooooooooooo=””> I’ve also had an unpleasant flare through most of September and the beginning of October, but that seems to be over now – phew. As usual, nothing whatsoever showed in the bloods. In fact, when I have my six-monthly rheumy appointment in December I’m expecting him to say ‘Oh, did you have a bit of a flare in July – your bloods are slightly up.’ I was 100% fine in July!

Crash bang wallop

September 17, 2012 at 8:12 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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I’ve been cruising along very nicely thank you for the last few months. I made the mistake of getting used to it I think … Great, I feel fine  … let’s get on with stuff then. Well, you only live once, people to see, things to do, natural history surveys to complete, courses to go on, friends to see … Spanish to learn, embroidery competitions to enter.

Next time I see my rheumatologist, I thought, perhaps we can talk about reducing the MTX.

When will I learn?!

It started a couple of weeks ago with sudden, severe pain in my right thumb. Then it went away. I didn’t see it as a warning sign – I’d got too used to being footloose and flare free. Then it came back … and then other bits started to hurt too … ooooooooh-k, maybe this is a flare, I thought.

And it was.

Fortunately not a terrible one – one of my flare-ettes/aka fizzles, but bad enough to act as a little reminder. It’s over now … I think … but I’m back to being careful …

Well, apart from botanical drawing class an hour’s drive away on Saturday, more natural history recording on Sunday, interviewing tomorrow …

Immune system has an on/off switch ‘in the mind’ …?

September 8, 2012 at 9:08 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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According to this article in the New Scientist (6 September 2012) the “the immune system has an on-off switch controlled by the mind”. On reading the article, one feels that this isn’t actually as daft as it sounds at first. The point is that, “the immune system is costly to run – so costly that a strong and sustained response could dangerously drain an animal’s energy reserves.”

Hmm, does that start to explain the fatigue felt by so many RA patients and dismissed by so many doctors? Given that RA is apparently caused by an  over-active immune system, then surely a strong and sustained over the top response must be pretty fatiguing?

Anyway, back to the article … given that the immune response is energy sapping, the theory is that the immune system will only bother kicking in to fight a mild infection if it feels the reserves it will drain can be re-stocked. Apparently Siberian hamsters will fight a mild infection in the summer, when food supplies are plentiful, but won’t do much to fight it in winter conditions.

This leads to the idea that the mind has an ability to play up/down the immune response depending on whether it feels there is help available … and that leads to an explanation of why the placebo effect works. If you think you’re taking a drug to help fight an infection, say, that makes it worthwhile to put up a fight and bring in the immune system, the theory goes.

The theory has now been supported by some computer modelling, which is all explained in the article but which I won’t go into here.

It leads to some interesting questions, to my mind, about autoimmune diseases.

Being a little flippant here, does this mean that all sufferers of autoimmune diseases are optimists who are so confident that help will always be at hand, that we bring our immune systems in on the flimsiest pretexts?

Is the reason autoimmune diseases seem to have become so much more prevalent in the last few decades (so I’m told) because we’re all generally  pretty healthy (until we’re not) and so the body/mind doesn’t have to question whether there are resources available?

And finally, if there’s an on/off switch in my mind, then why can’t I just turn the damn thing off and get on with life?

Dentastic!

July 19, 2012 at 10:41 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me | Leave a comment
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I’ve just been for my regular three-monthly dental check-up. It was the nicest and most uplifting dental check-up I’ve had in my entire life, punctuated not by drills and pokey things but by comments from the dentist like, ‘Gosh, you’re doing a fantastic job looking after those gums!’ and ‘Yes, things are looking really good here’ and ‘You’re obviously brushing really well.’

Then he made an interesting point, and one that I’m sure is right. To summarise (as he can waffle on a bit), he said it’s amazing how everything comes as a complete package; when my arthritis was bad, my hands weren’t great (and certainly my arms), and consequently even though it wasn’t a conscious thing I probably wasn’t brushing as well or for as long. On top of that I was generally feeling pretty rotten and it’s entirely possible that a day went by here and there without me even giving teeth a passing thought. I’ve been really well now for a good few months, with barley a flare, and not that many twinges (except that blasted left knee, which is still a bit of nuisance), and my shoulder (non-RA) is recovering well, and as if by magic my teeth are doing fantastically too.

If you have severe RA those holistic effects must be blinding obvious, but I thought it was quite interesting that even with a very mild condition like mine, there are differences that can be seen in the most unexpected places.

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