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: arthritis, doctor, osteoporitic fractures, osteoporosis, R.A., RA, research, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
According to a study from the Mayo Clinic, women younger than 50 with rheumatoid arthritis are very significantly more at risk of sustaining osteoporotic fractures (for which you presumably have to have osteoporosis first) than women of a similar age who don’t have RA.
The article is somewhat confusing, as it also states ‘Young men with rheumatoid arthritis (RA) are also at an increased risk, but not until they are over age 50 years.’ Um … is it me? You can find the article here and make up your own minds.
I think what the researchers are saying, and what the article is trying to say but not very clearly, is that anyone with RA is more likely to have osteoporosis than those without this dratted disease, which is common knowledge amongst most rheumatoid arthritis patients, I suspect, but if you’re under 50 you’re much more likely to get it than those who don’t have RA. Cheerful thought for the day!
Oh well, forewarned is forearmed; don’t let your calcium levels go down! (Not actually sure what you do to stop ’em, except drink milk, and of course most doctors won’t be testing for it unless you’re over 50 … or 60 …) Perhaps that’s why more ‘young’ women actually sustain osteoporotic fractures – because it’s not until they have a fracture and wonder why that anyone realises they have osteoporosis? Cheerful thought number two!!
Off for a pint … of milk!