Forum

vitamin d question

When i was diagnosed with ms i started taking vitamin d capsules because of the possible link with ms. It was not my ms nurses, neurologist or doctors recommending it or anything. I did it just because there was so much written about it at the time of my diagnosis. Then one day i came across a article about taking vitamin d over a long perid of time and how this can do more damage in the long run to your body (i do realise that taking anything long term can have bad effects on the body). It kind of scared me cause i had been at that point taking them for a while so i decided to stop taking them at that point. Some months after i started again but only taking maybe once or twice every 1-2 weeks.

But what i was wondering was

  1. how many people are taking vitamin d supplerments either recommended or you just decided to and why?

  2. the other question is do you think that they have helped you?

Hi,

  1. I just decided to - but not before Googling, and reading up about the available evidence, and concluding not only was it “likely” there was a link between MS and low Vitamin D levels, but also that it was very unlikely I’d do myself any harm by supplementing, just in case - so I decided to go ahead.

  2. No, I haven’t felt any better - but realistically, I didn’t expect to. I believe the benefit, if any, is protective, rather than therapeutic. I can never know whether I would have had more frequent and/or severe relapses without them. I do know that recently, when I ran out, and had to go without for a couple of weeks, I felt a bit worse (minor relapse, maybe?). But this might have been either (a) complete coincidence, or (b) psychological: if I was expecting something “nasty” to happen if I didn’t take my Vitamin D, I’d be on the lookout for any small change for the worse. In reality, I think my MS is quite variable naturally, but I could have mistaken this natural variation as being linked to running out of Vitamin D, if I’d been particularly looking for it.

Tina

Hi, I don’t take vit d , mainly I think really because there weren’t all these links between ms and vit d when I was diagnosed (1995) and then knowing that I had very likely had it since 1989 at least so it was a bit late for prevention by that time and also because betaferon was brand new and I was on it and kinda clung to the hope that it would help. One more thing, although the case for vit d seems compelling and the recent articles are interestng, I have seen many theories come and go over the year, and I am yet unconvinced that vit d (on it’s own anyway) is the full story and the answer. However, if this research had been out in 1995 when I was diagnosed I think I would have been tempted to have given it a go then. I tried (and failed) to improve with any of the (many) things that I did try. Having said all this I am interested in your post and the replies that you get , because in recent weeks it has crossed my mind again on many occasions that should be on vit d. Cheryl:)

Me again,forgot to say, I spent a few years in Africa as a young child and certainly did not suffer from the lack of sunshine that I experience now living in Aberdeen. Cheryl:)

I only take it from Oct till the sun comes out in spring and yes I think I did feel a bit better the first winter I started to take it, my mood was better anyway. I take D3 in droplet form.

Lots of people spend time in hot countries but remember it is not that we don’t get the vitamin D it’s that because of genetic disposition we don’t absorb it.

Wendy

x

Hi,

I take Adcal D3, but started taking them as my rhumy’ said my vit’ D level was to low for an infusion I was about to have.

Since taking an extra booster as the level I was at was to low, I have felt no difference at all. Having said that lots of people on this forum take extra since they now recon’ there is a connection with Vit D and MS.

I take chewable tablets, which are horrible, but disappear quickly. I intend having a word with my neuro when I next see her for her opinion.

Janet x

I take 5000iu per day by capsule, but I’ve just been recommended by a GP friend Bio D Mulsion as it is absorbed by the body better, so will give it a go.

I don’t know if it helps, but I’m prepared to throw everything I have against progression.

I take vitamin D tablets, there so small and taste like the candy necklaces you can buy lol. My Consultant told me about them, I buy them from America and there here within a week -free shipping aswell. I do feel that they have helped as ive noticed a difference. Im willing to try anything, you can only try. Each tablet contains 5,000 IU and in the winter I take 4 tablets and in the summer I take 3 -thats how many my Consultant told me to take.

Been taking it for 10 years after researching it. Recently bought a book about it, it’s good prevention for many other conditions, including cancer. My GP has allowed blood test on a few occasions to check my levels which are fine. Something is helping me, I really believe it’s Vit D :slight_smile:

I take it. I started about 19-20 months ago.

5000iu a day is recommended by Prof Giovannoni’s team at Bart’s.

It was also recommended to my friend by her MS nurse (again, 5000iu a day).

It is also recommended by my friend’s neuro who is a leading MS researcher and who has personally researched vitamin D3 supplementation in MSers (it reduced relapses).

I’ve also read most of the available research. I’m convinced that it’s important in the development of MS, but also in managing relapses.

Have I noticed a difference? I can’t tell. I could make all sorts of claims because I started taking it when I was relapsing badly and my MS has improved since then, but the fact is that RRMS is so variable, we could never know if what we do is actually having an effect unless we had an exact clone doing everything the same except the one thing. The only people who might notice a difference are people who were D3 deficient when they started because it can cause muscle and bone pain as well as difficulties walking, amongst other things. (I was low, but not deficient.)

If you’re worried about your levels getting too high, all you need to do is get a blood test from time to time. I would have thought 5000iu is highly unlikely to ever make your levels too high (just being in the sun for 10 minutes produces more than that), but it might be worth getting the blood tests to keep your mind at rest.

Karen x

I’ve been taking 25mcg of vitD3 daily for about six months. I’ve haven’t noticed any difference,maybe the dose is too low?

I lived in Australia and Africa as a child,I don’t know what my vitD levels are though.The way I see it is; it’s not doing me any harm and might do some good. I do spent a lot of time indoors these days.xxjo

I was advised against taking vitamin d supplements, by both my MS specialist nurse and my GP. Follow the health professionals advice, and you will not go far wrong, warning a lot of what is written on the internet is by those with no medical training what so ever.

Be very careful.

Chris R.

I. El. (Eng). (Rtd).

When I asked my neurologist about Vitam D3 and B12 he said B12 wasn’t worth bothering with however D3 appears to have some good indications. Then he said take 5000 units a day, or it wouldn’t be worth it.

I take 5000iu a day from a website called www.bodykind.co.uk I can’t say its helping but then I haven’t stopped since I started so maybe it is? All I know is I think it’s doing me good and given that thought it’s worth taking even as a placebo.

I took this information from the Barts & London blog and thought it was worth reproducing here. The conclusion is from Professor Gavin Giovannoni MBBCh, PhD, FCP (S.A., Neurol.), FRCP, FRCPath, who I understand counts as an MS professional.

http://multiple-sclerosis-research.blogspot.com/#uds-search-results

VMonday, 6 February 2012

Research: Sunlight and Vitamin D

Epub ahead of print: Bäärnhielm et al. Sunlight is associated with decreased multiple sclerosis risk: no interaction with human leukocyte antigen-DRB1*15. Eur J Neurol. 2012 Jan. doi: 10.1111/j.1468-1331.2011.03650.x.

Background: Both insufficient exposure to sunlight and vitamin D deficiency have been associated with an increased risk of MS. An interaction between human leukocyte antigen HLA-DRB115 (a gene that is responsible for immune activation) and vitamin D in MS was recently proposed. We investigated the association between previous exposure to ultraviolet radiation (UVR), vitamin D status at inclusion in the study, and MS risk including the interaction of these factors with HLA-DRB115.

Methods: A population-based case-control study involving 1013 incident cases of MS and 1194 controls was performed in Sweden during 2005-2010. Subjects were classified according to their UVR exposure habits, vitamin D status, and HLA genotypes. The associations between different sun exposure habits/vitamin D levels and MS were calculated as odds ratios (OR) with 95% confidence intervals (CI) using logistic regression. Potential interaction was evaluated by calculating the attributable proportion due to interaction.

Results: Subjects with low UVR exposure had a significantly increased risk of MS compared with those who reported the highest exposure (OR 2.2, 95% CI 1.5-3.3). Similarly, subjects who had 25-hydroxy-vitamin D levels less than 50 nM/l had an increased risk for MS (OR 1.4, 95% CI 1.2-1.7). The association between UVR exposure and MS risk persisted after adjustment for vitamin D status. There was no interaction with HLA-DRB1*15 carriage.

Conclusions: UVR and vitamin D seem to affect MS risk in adults independently of HLA-DRB1*15 status. UVR exposure may also exert a protective effect against developing MS via other pathways than those involving vitamin D.

“These results confirm the association between MS risk and sunlight exposure and vD levels; this is not surprising. No interaction was found between vD/sunlight and HLA genes; this is despite the observation that vD controls how active that gene is within the body. I suspect the study is too small; i.e. lacks sufficient power to see an interaction.”

“We can’t get away from the data that strongly supports vD as a preventative fator in MS; PLEASE DON’T FORGET TO TAKE YOUR SUPPLEMENTS. 5,000U / DAY!!!

“The evidence that UVR exposure may also exert a protective effect against developing MS via other pathways than those involving vitamin D is interesting, but speculative. UV may affect the function of immune cells as they pass through the skin. Despite this theoretical advantage of UVB (sunlight) over vD supplements, the case is not strong enough to stop supplementation. From a practical point of view it is difficult to find sunlight in winter, unless you purchase a UVB lamp.”

“Please note that most sunbeds provide UVA light and not UVB light; so you can’t get the necessary light from popping into your local tanning store.”

1 Like

@whammel

Worth noting from the wording though it appears the conclusion is to take Vitamin D3 as a preventitive measure to the “risk” of MS not as a medication for already having MS. I’m still taking it, I just find the wording implies people who don’t have MS but who don’t get enough sunlight should take it to prevent getting MS.

Yes, I agree that most of the evidence points to Vitamin d3 being preventative, although apparently, there have been some small studies to suggest symptom improvement and reduced severity, but I am much less sure that is true.

I just thought the idea that medical professional do not back Vitamin d3 needed a response, that’s all.

l first heard about vitd3 from a close friend who had been diagnosed with un-operable cancer. His wife - bless her - decided to take him to the States - to see an oncologist who said he could help him. The first thing this cancer specialist did was insist that he take 60.000ius vitd3 daily. This story has a very happy ending - after surgery and chemo - it is now about 7yrs down the line. My friend has had the all-clear - and still takes his vitd3. The surgeon said that you need a high level to help recovery rate. Recently, another pal of mine has been diagnosed with cancer - so when l saw her l gave her a pot of vitd3 10.000ius. She waited, until seeing her specialist ,so as to ask his opinion. He told her it was the best thing she could do - and would certainly help her - AND he advised her to make sure the rest of the family took it as well. We are now keeping our fingers crossed that she has a good chance of recovery.

From all the research that has been done -And every time you open a newspaper or read a magazine or look on any of the bbcnews site - the evidence is there that Vitamin D3 deficiency is linked to so many auto-immune diseases and cancer - and now macular eye degeneration. l shall keep taking mine.

F.

Hi all,

I’ve been taking 5000IU for about 2 years now. From all of the evidence i’ve seen in favour of it i can’t see a reason not to do so.

I can’t say i’e seen symptomatic relief as such but i’ve not relapsed either…is it just a RRMS natural variation thing?

Also my neuro and MS nurse recommend it too so i have their support. LDN…now that’s a different thing altogether with the neuro!!

take care

Mark

I too lived in Africa for 4 1/2 years when I was younger, so like Cheryl you can’t say I wasn’t exposed to plenty of sunshine. But then when Wendy said it’s because of our genetic disposition, that we don’t absorb it. It does make you wonder. I have thought about Vit D but all I take at the moment is multivitamins with Cod Liver Oil and Omega3 Fish Oils. I haven’t started taking the DMDs yet, but need to decide shortly.

Hi

I was diagnosed 4 years ago with an active MRI scan, at that point i started taking 100%rda vit d and fish oil tablets I was rescanned 8 months later with no new activity, I have kept taking it since with no noticeable deteriation in my health. This may be luck or the suppliments all i know is my neurologist told me to keep doing whatever I am doing as it appears to be working. I may be lucky and be in remission but you never know.