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!
Well I had my annual appointment today with the consultant. He was running nearly two hours late, but I couldn’t complain; if I need that sort of time one day, I’ll want him to spend it on me, so I can’t complain when someone else needs his time and he gives it to them.
Having said that, I did get chatting to another patient over the tea and biccies they bring when they’re running outrageously late, and we ended up talking about Mr Consultant. ‘Is it just me,’ says I, ‘or does he always seem really bored?’
‘Oh my, yes,’ my new friend replied, ‘and he always talks at the notes or the dictaphone, not at you.’
We carried on in this vein for a while, and then talked of other things. It made the time go so much faster having someone to chat to, and luckily for me she was next in line after me, so I could chat to her right up until I was called in.
So I went in expecting a bored and fed up Mr Consultant to glance and me and start chatting to his dictaphone, but no such thing. Just like the experience I had with the nurse six months ago, it was as though he’d had a personality transplant. He was charm itself. We talked through my issues, and instead of saying ‘Well, the bloods are fine, go away and stop bothering me’* he listened carefully as I told him about the various flares in the last six months, examined me, and agreed that if I had had flares and needed steroids, clearly my disease was not fully controlled.
The upshot of it is that my methotrexate dose is increasing to 17.5 mg and we’ll see how we go from there.
I was able to tell my buddy on the way out that she needn’t worry, Mr Consultant was in a good mood today; I just hope she found the same!
* Not that he’s ever been that blunt, it just feels that way!
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.
Thank you to Eileen from Italy for commenting on my last (winging) post, and suggesting that I might be vitamin D deficient, as this could well be a major factor in season affective disorder (SAD). I don’t actually think I suffer from SAD – I was just having a low mood day, and these are rare; however, I started to look into vitamin D and came up with some interesting stuff I thought I’d share.
What is vitamin D for?
Vitamin D is used by the body to absorb phosphorous and calcium from food, and we use calcium and phosphorous to make healthy bone. In children a lack of vitamin D can lead to rickets and in adults it can cause osteomalacia, a softening of the bones leading to pain and tenderness in bone and muscles. It has also been suggested, as Eileen mentioned, that it could be a contributing factor to SAD.
Where does vitamin D come from?
We create vitamin D using direct sunlight on our skin – hmm, there’s been a bit of a lack of that round here lately!
Vitamin D doesn’t just come from sunshine though. You can also find it in oily fish (which includes mackerel, salmon, trout, sardines, herring and anchovies and tuna but not tinned tuna apparently, as the canning process alters its content of oil.) Hmm … I really like salmon and sardines but hardly ever eat them. I eat a fair bit of tinned tuna, but that doesn’t help!
So where else could I get it from? Eggs – nope, very rarely eat eggs. (Perhaps that’s something to do with being a Penguin?) Spreads that have been fortified – erm, nope, hardly ever use spread on anything. Some fortified breakfast cerials – YES! So I checked out my cerials – a 30g portion gives you 25% of the recommended daily allowance (RDA). Hmm, well I’m trying to lose weight, so I try to have a bit less than 30g so I’m not even getting that 25%.
Anyway, according to this NHS article it’s hard to get it from food alone, and there definitely has been a lack of sun over the last year!
Who’s at risk
Apparently, according to the NHS and Department of Health a number of people are at risk of vitamin D deficiency in the UK and according to this report in The Telegraph vitamin D deficiency is becoming a very significant problem in children.
Adults at risk, and who should probably take supplements, are: “pregnant and breastfeeding women, especially teenagers and young women; people aged 65 years and over;
- people who have low or no exposure to the sun, for example those who cover their skin for cultural reasons, who are housebound or confined indoors for long periods;
- people who have darker skin, for example people of African, African-Caribbean and South Asian origin, because their bodies are not able to make as much vitamin D.” Well I don’t fall into any of those categories in theory, but I’ve been virtually house or office-bound for the last few months due to various flares combined with appalling weather! Also there are a number of studies, including this one suggesting that obesity leads to vitamin D deficiency. Well, I’m not obese but I’m certainly overweight and the study I’ve just linked to shows that deficiency increases in proportion to BMI increase. So … it’s not looking to good for me right now!
What to do?
It is possible to get a blood test to see what the vitamin D levels are doing, but frankly I really doubt that my cash-strapped GPs would be interested in doing one! I could pay for one – or I could just think ‘Hey, this makes sense’ and take a supplement. I’ve opted for the latter.
A word of warning about supplements
Hubby and I popped down to the chemist yesterday and had a look at the vast range of supplements available. I was really shocked to discover that even the lowest doses of vitamin D supplement were way, way higher than the RDA. This is probably because, as sensibly suggested by hubby, they’re meant as a boost for people who have really low vitamin D, but since I don’t know where I am level-wise I thought taking the lowest does of vitamin D only supplement, which was 250% of the RDA, still seemed dodgy. So I’ve settled for multivitamins. Even they contain 10o% of RDA of various things including D, but I thought OK, if I’m getting a bit more than 100% it probably doesn’t matter – but 250, 500, 1000% – just seemed a bit crazy.
The danger of a vitamin D ‘overdose’
Vitamin D is not an example of ‘you can’t have too much of a good thing!’ If you have much too much then you can absorb too much calcium, and that can lead to it being deposited in places you really don’t want it – like the kidneys. Excess of vitamin D can also cause calcium to be removed from the bones (don’t ask me why!), which again is not something one wants!
Feeling tons better today – I doubt that relates to two-days-worth of multivitamins (because I don’t think they’ll have kicked in yet), but I suspect it could have a lot to do with two days of sunshine, some warmth in the air, a couple of walks (the first proper walks of the year) and some gardening!
Oh dear, I’m not just exhausted, I’m feeling fed up, grumpy, resentful and … erm, just maybe, just possibly, perhaps, an incy-wincy bit hormonal! As to the RA – it’s not bad at all – I haven’t needed paracetamol (Tylenol) for a few days now and my pred taper is finished, so all that’s good. Nothing to be grumpy about, right?
Right! Trouble is, I still am grumpy! I think it stems from two things – one is the weather. (Very British of me to be complaining about the weather, but really, it’s April and it’s snowing. I’ve had ENOUGH snow!) The other is the Easter weekend – or lack of it! I spent most of my Easter weekend installing a new computer at work, connecting it to the internet, networking it to the other PCs, re-installing all the programs I needed on it etc. – and I really could have used a proper break! It didn’t help that I had done all this about three days before when I had the disk wiped on my old PC in the hopes that would give it a bit more life; it didn’t, obviously!
We’re going on holiday in the not too distant future so I’ll get a break – and the weather is supposed to improve at the weekend, but (very unusually for me) I just can’t seem to shake myself out of this low mood.
It doesn’t help that I’m screamingly, ravingly, insanely bored at work today. I don’t think it’s the work – it’s as interesting as ever (and it IS interesting!) but I can’t concentrate and I just want to be somewhere else.
OK, that’s enough whinging – I’m going to give myself a good shake and get back to work now!
OK, that might be a slight exaggeration, but considering how much pain and discomfort and just plain disability I was suffering from a few days ago, I’m amazed how much better I am! Things were getting ‘worser and worser’, right up until the day after I’d had my first 20mg of prednisolone, and since then they’ve been getting better and better.
Other factors certainly aided in the recovery, including the house being scented with heavenly ‘get well flowers’ from Bro & SIL,a cheerful and cheering visit from my Mum and poor handy hubby on hand to wait on me flipper and foot… but I’m sure the pred has had a major part to play.
The day after my first lot of pred, I was able to bend the knee a bit more but still not really walk on it. The day after that I had MUCH less pain and could hobble about for a short while with my stick. Then I was back to work for half-days, and now, a week-and-a-bit later, I’m back to full-time work, not using the stick at all and feel pretty fine … just so long as I don’t try to walk up stairs normally and don’t try to stay up ‘past my bedtime’ which was about 7:30 pm yesterday!
I’m getting some twinges of backache from the right-hand side, which I suspect is all the heavy leaning on that side while hobbling about before the knee got better, but hopefully that will pass soon!
No side effects that I’m aware of from the steroids, so all’s well at the moment. Hurrah!
Massive readership spike today as I was featured in Arthritis Care‘s newsletter. A slightly belated THANK YOU to Arthritis Care for that. I’s quite perked me up! Will try to post later on the latest knee developments, which are all good!