Tags: arthritis, blood test, doctor, GP, hospital, methotrexate, MTX, NHS, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatology, surgery
The hospital has decreed that patients on methotrexate for RA no longer need monthly blood tests – they will now be three-monthly instead. Now I don’t have a problem with having my blood tests every three months – as yet I’ve never had a single blip in my tests and if the hospital say three-monthly is safe I suppose I have to believe them and not just assume this is purely a cynical money-saving exercise: ‘Hey, what’s the odd life lost compared to a few thousand pounds saved, eh? Let’s do it! Right lads, down the pub …’
What I do have a problem with is the fact that they can’t book tests three months in advance, and yet we’ve been told to contact the rheumy nurse to make the next appointment. There IS NO WAY to contact her except by making an appointment to see her … a bit of a circular argument! My sensible and lovely nurse realised this straight away and in fact pointed it out to me with a comment on the lines of ‘I’ve told them ALL individually in reception, so don’t take any nonsense if they tell you that you should have booked it through me!’
OK, so that’s hopefully sorted out even before it becomes a problem, but how crazy that we can’t just book the tests when we see the nurse!
The surgery have also arranged monthly ‘walk-in clinic’ tests for the months we don’t see the rheumy nurse … but that’s a whole nuther story … a post to come in a day or so.
Tags: arthritis, Arthritis Research UK, fundamental science, joint pain, medicine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Rheumatoid Arthritis Pathogenesis Centre of Excellence, rheumatoid arthritis research, rheumatology, scientific research
Look around the RA blogging community for a while and you’ll see some consistent themes. One is that it’s hard to explain to Joe Public what RA is – another is that most of the drugs are by-products of research into other diseases (methotrexate for example, and most of the biologics were developed as cancer treatments) and there is little fundamental research into RA.
That picture has been getting better over the last few years, and it’s taking another step in the right direction. Arthritis Research UK, along with the Universities of Glasgow, Newcastle and Birmingham, is funding a major new initiative, the Rheumatoid Arthritis Pathogenesis Centre of Excellence, to be run from Glasgow. The centre’s main focus will be on why RA starts, why it attacks the joints, and why it doesn’t stop. These are fundamental questions, basic science, but the answers, if they can find them, are likely to lead to a host of potential new treatments.
As I understand it the ‘centre’ is virtual rather than physical, but it will mean the three universities and other partners undertaking major collaborations into these fundamental areas.
Science is a slow business – results may be a long time coming – but it’s great to know that there is a good level of funding for this fundamental research into rheumatoid arthritis.
And remember – if you’re based in the UK too, you can get 20% of Physicool products until 9 November 2013.
Tags: blood, blood test, GP, phlebotomist, Rheumatoid arthritis, rheumatology, rheumatology nurse, surgery
I mentioned to the facilities manager as I left work this morning that I was off for a blood test. When I saw him later he asked, ‘So did they manage to confirm you had blood then?’ Well – actually it was a bit of a struggle! The first attempt to prove I had blood was a dismal failure – in went the needle, out came … nothing. The rhuemy nurse waggled the needle about – nothing happened … except that it hurt … she waggled it about some more … OUCH! We mutually agreed that perhaps trying another spot would be better. It wasn’t. Hmm … I’d walked in rapidly and everything, the blood should have been flowing … but perhaps the problem was that it had all rushed to my head a moment before!
‘Why would it do that?’ I hear you cry. Because she’d just told me that the system of monthly blood tests was changing – in fact it was going. The new guidelines from the hospital are that we only need three-monthly blood tests done by the rheumy nurse. Well OK … that’s fine by me… but here’s the rub.
At the moment I go in for my blood test, have a chat about my arthritis and general health, query anything that’s bothering me rhuemy-wise (usually not a lot, ’cause I’m lucky most of the time!) and book the next appointment. Now the appointment times are being reduced, so I will only see her every three months and have less time for a chat about how things are going because she will have less time per patient, even though she’s not seen us for three months. On top of that – she can no longer book the next appointment – because, mind-bogglingly, ‘the system’ won’t allow booking three months ahead!
I do wonder how much this has to do with the computer system and how much it has to do with the fact that the further in advance appointments are booked, statistically the more patients are likely to fail to attend! So now, instead of a simple month-by-month process of blood tests and booking, I have to remember to do an extra thing – phone about three weeks before my next test is due and book it.
Well, that’s not so bad – after all it’s only three-monthly, isn’t it? I’m still spending less time than I was before attending monthly? Not so fast … I am also supposed to attend in the two intervening months for a 2.5 minute appointment with a phlebotomist, who will just have time to say ‘Hi’, take the blood and throw me out again – but on top of that, that won’t even be an appointment but a ‘walk in’. So if they’re not busy (hah, what are the chances of that, especially as I happen to know they’re short staffed) I could get seen straight away, but if they are busy I could be waiting who knows how long.
I told my nurse I would probably simply not bother attending the phlebotomy walk-ins and she said she thought I would not be alone – she’d heard the same from a number of patients! Of course you could say, and quite rightly, that we’re putting our own health at risk doing that and the service is there … but in six years I’ve never had a blood issue, and I do have a full-time job and I don’t have time to sit about for an hour waiting for a blood test, so … we’ll see.
Anyway, back to today’s blood test – when she scraped me off the ceiling and calmed me down and got the blood flowing round the body again, she was finally able to draw blood … which, I hope, will be fine as usual!
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, broken bones, doctor, GP, joint pain, NHS, osteoporosis, pain, polymyalgia rheumatica, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, rickets, stiffness, sunshine, vitamin D
I’m calling this Vitamin D-tail because it’s vitamin D in detail. I suppose it could have been Vitamin D-tale – the tale of vitamin D, but anyway, after my rambling and vague post about Vitamin D, Eileen in Italy posted a rather long comment, which I suggested we expand into a guest post, and here it is.
Eileen is a graduate of physiology and worked in the NHS before moving abroad. She has polymyalgia rheumatica, and spends a lot of her time making medical stuff comprehensible for other sufferers. As you will see below, she has a knack for this!
Vitamin D – you’ll probably have seen a lot in the media over the last few months. You might even have asked your doctor about it and probably got a dismissive “You get all you need from diet and sun and it isn’t important.” In the words of the song: “that ain’t necessarily so!”
What is Vitamin D?
Vitamin D isn’t really a vitamin – it is something called a pro-hormone and is made in the skin by the action of the sun’s rays on cholesterol and stored in the liver to be used to make a variety of different hormones. It is very important for the way the body uses calcium – without enough vit D you may have a low level of calcium in your blood and, in the long term, you may not build bone properly.
Why do we need it?
The original importance of vit D was seen as preventing rickets in children and it helps prevent osteoporosis in adults. However – that isn’t all: it is now thought that it is involved in many processes in the body and being deficient can give you aches and pains in your muscles and joints and contribute to depression and may be particularly significant in autoimmune disorders. More and more research is suggesting, too, that the amount we need is really much higher than what they have been saying for years.
Where do we get it from?
Many GPs still believe you get vit D from food – in fact you get less than 10% of even the amount they say you need in food. It is found in oily fish, salmon, mackerel, herring, tuna, for example. It is highest in wild fish – and even then you would need half a pound of salmon every day to get what you need – but much lower in farmed fish so you would need more. Tinned tuna in oil has far less than fresh – and the “healthy” version in water has almost none left because of the canning process. Other than that you could have a 17 egg omelette for lunch, or a couple of kilos of mushrooms. When you see in an article that “fortified” foods provide vit D that mainly applies for the USA where milk, orange juice and cereals have vit D added to them. Not so in the UK where margarine is described as fortified – but only so that it has the same amount of vit D as butter! The food with the highest level of vit D is fish oils – maybe great grandma knew something when she got the bottle and spoon out! But you must not rely on cod liver oil – it also has a lot of vitamin A in it and that is dangerous if you take too much.
The main way to get enough is being out in the sun: about 20% of your skin needs to be exposed to the sun between about 11am and 3pm in order to be able to manufacture enough. But there are problems with this in the modern world and living in northern climes. The skin factory is most efficient at the age of 20, from then on it starts to slow down gradually anyway until at age 70 it is at less than 25% capacity. As you get older, you wear more clothes and spend more time indoors during the middle of the day doing boring things like work, looking at that lovely sunshine through the window – which blocks the essential wavelengths of light. When you do go out you use sunscreen – many foundations now contain Factor 15 and even Factor 8 sunscreen reduces the amount made by over 90%. And we have had it drummed into us that we shouldn’t go out in the midday sun and always “slip, slap, slop”. Anyone living north of Turin in northern Italy is so far from the equator that between October and May they won’t make enough vit D from the sun – the sun’s rays have to strike your skin at a high angle to flick the switch to turn the machine on, once your shadow is longer than you are tall – the sun isn’t strong enough. The further you are north, the less you make. So that means that you have to store it up between May and September – and then you get a summer like last year! In children, all this is added to by the fear of letting children out to play and their desire to play on computers rather than on the swings. And if you have dark skin or a suntan – your skin factory takes even longer to make vit D.
What are the issues if we don’t get enough?
I live in northern Italy, just slightly north of the level of Turin, and it is reckoned by our local osteoporosis expert that even here more than 80% of the population (both men and women) are vit D deficient and that increases a lot of risks as they age. Obviously most people know about osteoporosis and resultant broken bones – but fewer know about its role in muscle health. Severe deficiency can lead to similar stiffness and aches to those that many people with arthritises are familiar with. A few weeks of very high doses may improve that dramatically. It is something that should always be checked to rule it out with regard to one particular arthritis, polymyalgia rheumatica, as the symptoms are so similar. There’s nothing to say you aren’t suffering from both, but improving your vit D status rules out one cause. As we age we tend to fall more (another factor increasing your fracture risk) and studies have shown that improving vit D levels reduces the number of falls and broken bones the elderly have as well as improving their balance in general, walking and ability to get up from chairs unaided. In fact, it is thought that simply making sure residents in homes are drinking plenty and improving their vit D would prevent a large proportion of the falls that are so common and can lead to hospitalisation.
Getting a test
A request to your GP to check your vit D level is often met with some degree of scorn but anyone with an autoimmune disease should have it checked because low vit D and autoimmune disease are associated but it isn’t known whether it is cause or effect – and everyone who is told to take “bone protection” medications (bisphosphonates or alendronic acid) should also have their vit D and calcium levels checked first because they don’t work if you are low on either and they can reduce your calcium levels even further and make you ill. It is stated in the drug information by the manufacturers – some doctors tend to think they know better. Someone I know was allowed to have her vit D checked with a very patronising attitude by the GP: “It’s very expensive you know, about £200”. It isn’t, it costs about £25 and, as a last resort, a hospital in the Midlands offers it to anyone by post as well as to NHS hospitals!
What do you do once you know what your vit D level is?
The level at which you are said to be deficient varies from one NHS Trust to another. As an example, however, Gateshead Trust in the northeast of England recommends a range of 48 -144 nmol/litre as being adequate. Below 25 they say it should be treated with high dose vit D3 – and by high dose they mean 60,000 IU a week for 12 weeks! That, of course, needs to be done under medical supervision although if you are very deficient the likelihood of adverse effects is not very high. Between 25 and 50 they recommend supplements of 1,000-2,000 IU a day for 12 weeks, and it is easy and relatively cheap to obtain tablets for that sort of dose from Boots or Holland&Barrett. Once you are what they describe as “replete” you should continue with 800-1,000 IU/day, especially in the winter but also if you are not getting out into the sun much. Even with supplements some people find their vit D level falls quite rapidly so having your vit D checked every year or if any symptoms that disappeared with being given vit D return may be a good idea.
Be careful though: if you are on the standard “calcichew” supplements given to you if you take prednisolone, do not just take extra tablets to increase your vit D intake (whatever your doctor suggests). Taking calcium and vit D supplements together can sometimes cause kidney stones or “grit” which can irritate your bladder. You need some extra calcium because of taking prednisolone (it makes you lose more in your urine) but too much is not a good thing. If you need more vit D than the 800 IU in two tablets then buy pure vit D tablets and take both. You should not take more than 4,000 IU of vit D a day unless your doctor tells you to but 2,000 IU is a perfectly safe dose for most adults.
And if you want to top up your vit D the skin way: it is safe to stay in the sun with no sunscreen for about 10 minutes, or the time it takes to start to get a tiny bit pink and warm and Cancer UK has issued some guidelines for safe sun exposure rather than the previous “don’t go out in the sun” mantra. Low vit D has also been associated with depressive mood and with SAD (seasonal affective disorder) but going out in the sun for a walk will achieve a lot in terms of making you feel better. All the UK needs now is some sun!
A few references:
http://pain-topics.org/pdf/vitamind-report.pdf Pain relief through vitamin D
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! 🙂