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: coupon, discount, Physicool, UK
Further to my review of a Physicool cooling bandage, I’m delighted to announce that the company are offering 20% off to anyone putting in the code ‘penguin‘ into the coupons option at the checkout, until 9 November 2013.
At the moment this only applies to readers in the UK.
Please note: I do not work for this company or stand to make any profit from this in any way. I found it a useful product and if you choose to use this promotion then I hope you do too!
Tags: ankle, bandage, combination pack, coolant, cooling, cooling liquid, evaporant, inflamation, inflamed, knee, knee pain, Physicool, seal, wrist
The nice folks at Physicool asked me to review their cooling bandage combination pack. I said I’d be very happy to do so provided they didn’t mind a completely honest review – and they kindly agreed and sent me a pack to try out. So here goes:
What is Physicool?
Physicool is a rapid evaporant which can be poured or sprayed onto their bandages. The liquid quickly evaporates into the air, drawing away the heat from the inflamed area and creating a cooling effect,
What is the combination pack?
The combination pack that Ian at Physicool sent me consists of a 3m long bandage and a 500 ml bottle of coolant. The bandage comes in its own small foil packet with coolant already applied, and that packet and the coolant bottle are packaged in another foil packet.
Opening the packs
On first use the seal along the top of both packages has to be torn off. My arthritis hands struggled slightly with the larger pack, but not much, and the smaller pack tore easily. Each pack is then sealed with a typical push-together plastic seal – not sure what those are called but you hopefully get the idea! These open easily.
Applying the bandage
The bandage has to first be squeezed to remove any excess evaporant, but it doesn’t need a very hard squeeze so that didn’t prove a challenge. I used the bandage on my knee – although I had a ‘size A’ bandage which is more appropriate for wrists, ankles etc. The knee was where I had the inflammation though, and actually the size was fine. The bandage is neatly rolled inside the bag and easy to unwind and apply. It has a velcro-style strip which can be attached to itself or to the bandage.
What I liked
- It works. It cooled the inflamed area really, REALLY fast and that meant the pain went away fast.
- The bandage is easy to apply.
- I only needed to use it for half an hour – after that I took off the bandage and my knee still felt really cool for another half an hour. But it should last for up to two hours – and it can then be re-charged and you can carry on using it.
- It’s portable. I use an ice pack normally but I can’t use that at work because we have no freezer in the building! This is something I can keep at work, and also take on holiday. Fantastic!
- The coolant supplied with the bandage should last for up to two hours of use – so I’ve got four applications in the bandage before I need to recharge.
- There should be enough coolant in the recharge bottle for around 8 more thirty-minute uses.
- The packs are quite easy to open and the bandage was easy to apply and it didn’t slip once I’d put it in place.
What I didn’t like
- It’s wet. Well, it would have to be of course, because if it wasn’t it wouldn’t evaporate! However, because it is a rapid evaporant it doesn’t feel wet for long.
- It has a smell. It’s not a bad smell, but it’s definitely a smell. No smell at all would be perfect, but if it has to smell this isn’t a particularly unpleasant one – just very slightly hospitally!
- It needs to be exposed to the air to work effectively – otherwise it can’t evaporate so well, of course. This means that whichever bit of you is using the bandage has to be uncovered. Not a problem if you want it to be cool, you may think, but what if the knee’s the problem and the only way to ‘expose it’ is to roll up your trousers? that leaves you with a cold ankle and calf.
- Because it needs to be exposed to the air, when I used it on my knee and then put my leg up, the underneath part was against my footrest, not exposed to the air. This meant I had a wet patch for a while under my leg after I took the bandage off. It did evaporate though!
Do the benefits outweigh the irritations?
DEFINITELY! Now that I know what the ‘problems’ are for me, I can work around most of them. I can make sure I have a small blanket to cover any bits I don’t want exposed, and if I put my leg up, for instance, I can put it on a foot stool and leave the actually knee unsupported to avoid a wet patch. As to the smell and the temporary wetness – considering how incredibly effective this is at cooling the painful area – I can live with those.
Want to know more?
Tags: aches, arthritis, doctor, joint pain, knee, methotrexate, MTX, NHS, nurse, pain, physical therapy, physio, physiotherapy, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, tiredness, work
I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’
Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’
Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!
The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!
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: autoimmune, autoimmune arthritis, autoimmune diseases, booths, free register, health, IAAM, medicine, Register Free, virtual convention, WAAD, World Autoimmune Arthritis Day
World Autoimmune Arthritis Day – yes, it really is global, because it’s also virtual. All you need is an internet connection, and it’s FREE.
REGISTER for FREE to attend World Autoimmune Arthritis Day’s 2013 Virtual Convention, here: http://worldautoimmunearthritisday.org/expo/
World Autoimmune Arthritis Day is an annual 47-hour event where nonprofits, advocates, and experts from around the world unite in order to provide educational and awareness information to patients, their supporters, and the general public.
If you ‘attended’ in 2012, which was a great event, this one should be even bigger and better, with Nonprofit Booths, Vendors, a Raffle and a special feature: A Day in the Life with Autoimmune Arthritis (an Apple/Android app and Exhibit Booth).
It starts at 11am British Summer time or 6am ET/USA on May 19th and ends at 10am British Summer Time or 5 am ET/USA May 21st, 2013. It is an interactive, LIVE, Virtual Convention that you can attend for FREE…just find an internet connection and join the rest of the world for 47 hours of education and fun!
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
Here is a message I received from Jude at Arthritis Research UK. They’re looking for people who have been diagnosed with this rare form of arthritis, so if you have it, please fill in their survey (link below):
It seems good information about a rare form of arthritis called palindromic rheumatism is hard to come by, but I’m hoping some of your readers and bloggers can help put that right. I’m doing some work for the charity Arthritis Research UK, which wants to develop information materials to help people with palindromic rheumatism manage their condition. As a first step, we want to talk to people who have been diagnosed with the condition. It’s characterised by unpredictable flares of pain and swelling in joints, which return to normal between attacks, and can have life-changing implications. As you rightly say, everyone is different, and with so little research into palindromic rheumatism, we want to hear at first hand what it’s like to live with it, how it affects people and what their experiences of getting a diagnosis were. We’d like to invite anyone among your contributors and readers who has palindromic rheumatism to take part in a survey between April and July 2013. All they have to do is complete a short online questionnaire at http://www.arthritisresearchuk.org/palindromic. If they agree, we’ll then contact some by phone to hear their palindromic rheumatism story in more depth.
Meanwhile, thanks for the very positive blog about RA.