During the last few days a number of newspapers have reported a study which suggests that Vitamin D may be helpful in the treatment of MS. For example the Daily Mirror: mirror.co.uk/lifestyle/heal...
It is not the first time Vitamin D has been connected with autoimmune diseases, including vasculitis.
As far as I understand it there are few dietary sources of Vitamin D - it is largely only available through sunshine and supplements. Perhaps vasculitis sufferers should try to get more sunshine (even though our immunosuppressive medication possibly raises our risk of skin cancer). Perhaps we should consider taking Vitamin D supplements. Does anyone know of any research on this, or have thoughts on it?
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MAC12
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The whole Vit D thing is very polemic with very different opinions on the role of Vit D and auto immune illness.
Many patients with auto immune disease, including Vasculitis can be deficient. If you have never had your Vit D checked and aren't taking Calcium and Vit D tablets ( usually prescribed if you are taking prednisolone ) then you should ask for it to be checked. Low levels of Vit D can cause fatigue and muscle ache although to be honest I didn't notice a difference in my symptoms when I was on supplements for low levels.
The other vitamin deficiency that can go hand in hand with auto immune disease is Vit B12.
Thanks for this. None of my blood tests have ever shown Vit D deficiency. I suppose the interesting thing about this new research - which has since been picked up by pieces in the Times etc, is that it is not just suggesting that low Vit D may play a part in autoimmune disease (MS) - a notion that has been around for some time - but that large doses of the vitamin may be of help as a treatment. It's only one study of course, but as far as I'm aware this is something new. Of course the study doesn't relate directly to vasculitis at all, but it seems interesting. And perhaps vasculitis sufferers might think that taking Vit D supplements, even if they are not showing a deficiency, might help.
There is plenty of evidence showing that low vit D is associated with autoimmune disease - but as far as I know little as to whether it is cause or effect. A study in Finland found that giving neonates vit D supplements greatly reduced the risk of them developing Type 1 diabetes as teenagers - very common in the far north where vit D production from sun is next to impossible. Scotland is much the same. So vit D would appear to be involved somewhere in the autoimmune destruction of pancreatic cells - why not in other autoimmune processes?
You say you are not deficient - but on what scale? In the last few years it has been accepted that while above 30 ng/ml was considered acceptable, in fact that is not by any means an optimum level, and a few years ago Gateshead Trust in the north of England revised their range to 75-150ng/ml.
Less than 10% of vit D requirement can be gained from diet - and most of it comes from egg yolk, oily fish and mushrooms exposed to UV light. Eat well over half a pound of wild salmon every day and you're probably OK, or a 17-egg omelette with a pound or two of mushrooms - but that is just silly. Even if you take your vit D production in skin as perfect at age 20, it is down to 25% of that at 70. And to get your dose you need to expose bare skin for 15 mins at midday every day, no clothing or sun screen or make-up in the way - providing you live far enough south. The sun's rays have to strike the skin at above a certain angle and in the south of the UK that is only so between 11am and 3pm from May to September. The further north you are, the worse the scenario.
All patients on pred are pretty much automatically given calcium/vit D supplements because of the risk of problems with bone density - but the best they do is maintain the level, whatever it was at first.
And I'd like to say - doctors who say you can't overdose on vit D are not quite correct: you can't overdose on natural sunshine, there is a mechanism that stops after a certain amount. But it is possible to overdose on supplemental vit D and getting to levels above 200ng/ml can be associated with problems. If you are on high dose supplements the blood level should be checked at intervals.
I have leukocytoclastic vasculitis, and Vitamin D has helped tremedously. I take Vitamin D three times a day, Vitamin C three times a day, 12.5 mg of diphenhydramine three times a day, and Butterbur 50 mg twice a day. The Vitamin D and Butterbur really seem to be the key to this. I can hardly tell I have vasculitis as long as I steer clear of stress and stay on this regimen. Before, I was up all night every night itching, with red spots all over my arms and legs, especially ankles. I was miserable. I do take a lot of Vit D - 2,000 mg three times a day. I may start to back this down a little. But my doctor said it's nearly impossible to overdose on Vitamin D. If you get the butterbur, get a brand that is certified PA free. I use Solaray. I know the best brand is Petadolux. I am not a doctor, but this has worked for me. I gave up on the doctors. They just wanted me to take Plaquenil and shut up. I value my eyesight, so didn't want to do that.
I'm also Vitamin D deficient (very very low when first tested). It was spotted at the same time as all of my symptoms started a few years back. There is no way of telling how long I had been deficient and if it was linked to the arrival of the other symptoms but it is an interesting area for debate. I also take vitamin D 50,000 IU weekly and have regular blood tests, which mostly show I have just about crept into the lower end of normal. One experiment to go without the replacement therapy saw the test result plummet and was restarted very quickly.
Butterbur? What does that supply? We have it growing plentifully in the garden so if it could be beneficial in some way, that would be great! The only use I know for it was that the giant leaves were used for wrapping butter when the women spent the summer up at the summer grazings.
I've been on high dose vit D3 for two years now. I put myself on it. 5,000 i.u. daily which is just over the amount (4,400 i.u.) needed to get blood levels of 75 nanograms / millilitre, this being the point at which it actualy starts to have the biggest impact on the frequency and duration of chest infections -found this out *after* I started taking it on my original premise that if it helped prevent MS, then it might help my mononeuritis multiplex.
A 50,000 i.u. dose in France when on hols got me going up hills I didn't think were possible any more... Although the neurologist said to me 'If it hasn't got better after 2 years, then it isn't going to happen'. Anyway, happily it is proving him wrong, I am regaining the missing reflexes and quite a lot of sensation and strength too - the illness having knocked out quite a bit of my motor nerve and sensory nerve fibres.
Another happy thing that has happened is that I've reduced to about one twelfth the frequency of the frequent chest infections and copd exacerbations, although this side of things took a big hit immediately after my 'flu jab in Oct last year.
The safety profile is very good with D3 and the 50,000 i.u. a week is standard fare across the channel where they give it to retirees to get them moving about again. However, the increase in mobility has, apparently, led to more falls for some (running around too much?) which if you've got dodgy old bones is a bit of a double edged sword.
There's stacks of research (proper stuff, not Gillian McK stuff) demonstrating the positive effects and very few findings of negatives. It works on several levels - a kind of regulator for the immune system and something to do with stopping bugs sticking in your lungs.
examples of peer-reviewed data:
American Journal of Clinical Nutrition:
"Vitamin D deficiency, muscle function, and falls in elderly people" authors: Hennie CJP Janssen, Monique M Samson, and Harald JJ Verhaar
American Journal of Clinical Nutrition:
"Vitamin D intake to attain a desired serum 25-hydroxyvitamin D concentration" authors: John F Aloia, Manish Patel, Rhett DiMaano, Melissa Li-Ng, Sonia A Talwar, Mageda Mikhail, Simcha Pollack, and
James K Yeh
Curr Infect Dis Rep (2013) 15:148–157
DOI 10.1007/s11908-013-0321-9
"Could Vitamin D Have a Potential Anti-Inflammatory and Anti-Infective Role in bronchiectasis?"
Authors: Jim Bartley & Jeff Garrett & Cameron C. Grant &
Carlos A. Camargo Jr
Note the phrase 'anti-inflammatory role' in the above reference. Not forgetting the current views on it helping MS as mentioned by a previous author in this post.
It's important to remember that the 400 i.u. daily recommended amount is only just good enough to prevent rickets or your teeth dropping out and I think we need a bit more than that if we have vasculitis. About 11 times as much, if you read the middle ref. above.
Hey, hope this helps. PS all the regular stores have it in only 400 i.u. doses. e.g. Boots, Lidl, Tesco etc. if you want the proper dose, go to a health food shop (but prob not H and B, they only have 400 i.u. round here).
I can get it in Plymouth, Tavistock, Totnes and Exeter no trouble. Drops, tablets, spray or capsules according to what you find easy to swallow.. ...Ring before travelling! Avoid dodgy online retailers with no real store, they'll just steal your data. If in France - get it from some pharmacies, they have it in ampoules of 50,000 i.u. to mix with water and drink.
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