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! :-)

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.

Second shoulder injection

December 17, 2012 at 5:29 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, Me, rheumatoid arthritis (RA) | 1 Comment
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Well, I’ve had my second shoulder injection. It was a week or so ago now, and it’s definitely working. Things aren’t perfect, but they’re a heck of a lot better than they have been.

This was an injection into the tendon, not the joint, guided by an ultrasound scan so they could see exactly where the steroid injection needed to go.

The advice in advance with this one was don’t drive and do rest for 48 hours, so hubby kindly took me into the hospital on his day off. We decided to go a whole hour early in case of parking difficulties, so of course we parked with ease! But when we came out an hour later, it was heaving and I was really glad we’d made the decision to go early.

I don’t know why they bothered sending out instructions in the letter to wear loose and washable clothing, since it turned out I had to take off the top half and put a gown on anyway, because my bra strap  was in the way!  That was only mildly embarrassing, when the gown flapped about because the nurse couldn’t find the tabs to do it up!

Then I sat down facing the radiologist and the screen, as instructed, and he scanned the shoulder with ultrasound. He confirmed the tendon was indeed inflamed, pretty much exactly where I thought it was, but happily not torn. Then he got me to put my arm in an incredibly uncomfortable position and keep it there, and took out a scarily huge needle. ‘Focus on something else, Polly’ I told myself as it came towards me.

‘Just a little scratch,’ said the doctor, cheerfully.

It was more than a little scratch but not madly painful. ‘Don’t think about the BIG, SCARY NEEDLE Polly’ I said to myself, ‘ la, la, la, think of little gambolling lambs and mountain streams. La, la, la …’

‘Look,’ said the doctor cheerfully, ‘You can see the needle on the screen!’

Mmm, thanks mate, just what I wanted! And sure enough, there it was, a long, straight stiletto floating about in the various incomprehensible (to me) wavy lines of the ultrasound. Actually it was quite fascinating to watch – for a bit. Then it started to jigger about alarmingly, and whether it really was jiggering about inside me, or whether I just thought it was and it caused me to tense up, I don’t know, but suddenly it was really, really painful. I must have made a that’s really, really painful face because the doctor realised it was hurting and said he’d stop for a bit.

Now I don’t know about you, but when I have a ruddy great needle in part of my anatomy I’d rather just press on, so to speak, and get the job done, especially if the alternative is to sit and rest for a minute with the needle still stuck inside me – so I said no, it was fine, and he carried on. Actually the pain did diminish, so perhaps I had just tensed up for a bit.

While this was going on another doctor came into the room and apologised for having been absent. ‘No worries,’ said the radiologist, ‘you haven’t missed anything. It’s just a shoulder. Boring.’

I gave a little involuntary chuckle, which went straight over the doc’s head but the nurse quickly added, ‘Not that we’re saying you’re boring!’

At that the radiologist did have the grace to look mildly embarrassed, and he said, ‘Oh believe me – it’s good to be boring! We do hundreds of these procedures so I know exactly what I’m doing. You don’t want something rare!’

Well, that was fair enough I thought.

‘By the way,’ I said, ‘when the instructions say “rest for 48 hours,” what exactly does that mean?’

‘Whatever you want it to mean,’ said doc with a kindly smile. ‘There’s no scientific basis to it. Just see how you feel and what you feel like doing.’ So I did. They day after the injection it didn’t hurt much so long as I did nothing but veg about and be a couch potato, but it did hurt if I did ANYTHING with it. So I didn’t do anything with it. I watched an entire season of Dollhouse (thanks Maggie) and let hubby wait on me when he got home! The following day I thought, ‘I’m fine – I’ll go into work’ so I did.

MISTAKE! Two hours at work and my shoulder was in a lot of pain – so I went home again. (Advantage of being the boss!) By the next day it really was much better and it’s continued getting better and better so far – so flippers crossed that will continue!

 

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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