Tags: arthritis, consultant, diagnosis, doctor, flare, flare-up, hospital, knee, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?
Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.
So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.
So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.
So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!
Well, back to crossing those flippers and hoping it never comes to that!
Tags: arthritis, fractures, osteoarthritis, osteoporosis, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
You know, when I was first diagnosed with rheumatoid arthritis six years ago, when I was 39, comments like that used to really annoy me. I lost count of the number of people who said things like ‘Oh, aren’t you a bit young for that? My granny has that. She’s lost some weight lately though and feels so much better.’
‘Why do people have to make dumb comments like that?’ I’d wonder. So I’d try educating them – I’d patiently explain that what I had was rheumatoid arthritis, an autoimmune disease where my body has decided it’s a neat idea to attack its own joints, whereas what their granny had was probably osteoarthritis.
My favourite response to that was ‘Oh no – she had a big bowl of cereal every day and had really strong bones.’ So I then had to explain that osteoarthritis was ‘wear and tear’ arthritis, and what they were thinking of with the milk was osteoporosis, which is a reduction in bone density that can lead to fractures amongst other things, and which can (maybe … sometimes) be avoided by a good calcium intake.
Usually, with a few deep breaths and counts to ten, I would manage an explanation that convinced them that granny and I didn’t have the same thing – but it did used to drive me nuts.
Now, seven years on, I’m 45, overweight, look 50 on a bad day, and nobody says ‘Aren’t you too young for that?’ any more.
I kind of miss it.
Tags: aches, arthritis, consultant, doctor, fibromyalgia, flare, flare-up, hands and feet, hospital, joint pain, knee, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
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.
Tags: anti-TNF, arthritis, health, IRHOM2, medicine, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, science, TNF, TNF alpha, tumour necrosis factor
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!
Tags: arthritis, genes and RA, genetic therapy, R.A., RA, RA genes, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatoid arthritis genes, rheumatology, X chromosome
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!
Tags: healthline blog awards, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, rhuematoid arthritis warrior
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!
Tags: aches, arthritis, fatigue, flare, flare-up, joint pain, knee, R.A., RA, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, work
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!
Tags: aches, arthritis, flare, flare-up, joint pain, knee, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
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.
Tags: RA, Rheumatoid arthritis, shoulder, shoulder injection, tendon, tendonopathy
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!
Tags: arthritis, autoimmune diseases, immune system, new scientist, placebo effect, psychology, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
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?