National MS Society Convenes Summit to Explore Vitamin D Trials to Prevent MS

[Shashi]

This article just came out from the National MS Society newsletter. I thought it was very interesting that they're looking at low Vitamin D as a preventative for MS. I've also read where people who have already been diagnosed with MS may have fewer and less severe exacerbations when they are treated with Vitamin D.

I know since I've been taking daily doses of Vitamin D (I'm on about 10,000 IU daily right now), my symptoms have gotten less severe and I've had fewer flare ups. (And yes, I know I've never been formally diagnosed with MS, but my doctors all still feel that I have it.)

Here's the link for the article: http://www.nationalmssociety.org/new....aspx?nid=5860

[Sequoia]

Hi Shashi,

I've moved your thread to General Questions and Answers so more people will have a chance to see it.

By the way, I think you may have misspoken when you said "low Vitamin D as a preventative for MS"...I'm pretty sure it should be high Vitamin D as a preventative agent, or alternatively, low Vitamin D as a causative agent.

[0485c10]

I saw the article and was glad you posted it--a while ago I posted an blog the complained that scotland, which has the highest rate of MS in the world, is attempting to add vitamin D supplements to the food supply to bring their MS incidence down. so it is a global effort to find out what vitamin d does in MS. we should have more certainty about it in a nother 20 years or so if we find scottlands incidence of MS comes down.

[Shashi]

Hi Shashi,

I've moved your thread to General Questions and Answers so more people will have a chance to see it.

By the way, I think you may have misspoken when you said "low Vitamin D as a preventative for MS"...I'm pretty sure it should be high Vitamin D as a preventative agent, or alternatively, low Vitamin D as a causative agent.

Thanks,, Sequoia. That is what I meant (one or the other, I can't remember now!

[jumpinjiminy]

I read some literature not too long ago that concluded their studies showed a 40% decrease in exacerbations from treating with Vit D. I can't recall all of the details about the study, number of subjects, type of D used, etc. The information is out there if anyone is interested.

Shashi, how long have you been on that dose and is it D3? I've been feeling better since switching from D2 to D3. It made a big difference in my lab values. I'm not 100% sure it's the D3 or a combination of things, but something is helping.

And what's up with Scotland treating an entire population? Are they all deficient? Hrmmm.

[Shashi]

Shashi, how long have you been on that dose and is it D3? I've been feeling better since switching from D2 to D3. It made a big difference in my lab values. I'm not 100% sure it's the D3 or a combination of things, but something is helping.

I've been taking 10,000 IU of D3 for several months now. I was taking it every other day, but at my physical last month, my Vit. D level was 36 (up from 26 a year ago), but my PCP wants my level to be over 40, so she told me to take it every day. Before the 10,000 IU dose, I was taking 2,000 IU every day for about a year (since I had the test that was 26 and my doctor had me take the 50,000 IU a week pill.) I do feel better since I've been taking Vit. D3. I used to have flare ups every couple of months, but now I only have maybe two a year, and the residual symptoms don't seem as bad either.

[Kimmy92279]

Since getting my diagnosis of demylinating disease (probable MS but no formal diagnosis yet) I've been reading a lot about Vitamin D and how much it's been reported to help. About 2 years ago my psychiatrist had be tested and I was low at that time. I was retested recently and while I "technically" fall within the "normal" range of 30-75, I was only at 35. My regular doctor said based on newer research they are leaning towards wanting people closer to 50. I had already upped my intake of Vitamin D from 2000 ui to 4000 ui and she said that was a good idea.

I actually didn't even realize that there was a D2 and a D3 vitamin - I'll need to check it out and see which one I'm taking.

Blood tests also showed me as low for B12 so I've started taking that supplement as well and hopefully it helps too.

Kim

[knuckle]

No one seems to ask "why" vitamin D seems to be beneficial to MS.

Here's my take...

Vitamin D increases endorphins. Endorphins are hormones that regulate the immune system.

This is why Low Dose Naltrexone (LDN) works well for MS patients especially if they take it early upon disease diagnosis.

I would not be surprised if taking vitamin D, LDN, or even Malic Acid (also helps create endorphins) could be just as effective as a beta-interferon or Copaxone. 30% efficacy is not a high bar and LDN user surveys already show efficacy exceeding 60%.

Biogen's new BG-12 drug, which basically helps produce endorphins, mirrors LDN efficacy reported.

Unfortunately, there's no money in endorphins and no one is going to fund a clinical trial on vitamin D or LDN.

[Shashi]

Unfortunately, there's no money in endorphins and no one is going to fund a clinical trial on vitamin D or LDN.

Actually, that's what that article is saying, that they are going to start a clinical trial on Vitamin D in preventing and treating MS.

Here's a link talking about the clinical trial:

http://clinicaltrials.gov/ct2/show/NCT01490502

[knuckle]

Yes, but with Copaxone, for which I understand and I'm sure they'll get meaningful data.

It would be great if they could analyze the data, or set-up a trial, to determine if vitamin D was just as effective as Copaxone.

One thing this trial doesn't seem to address is efficacy by sex. Considering vitamin D plays a role in creating endorphins, and endorphins are hormones, and hormones play a role in disease progression, I would not be surprised if vitamin D is more effective in slowing MS in females.

[Seasha]

Another article in MS Connections

Just received my copy of this magazine which has an of short article that backs up the Vit. D connection.

One article is about bone health. To paraphrase, it has long been known that PwMS are at risk for bone loss (& low bone mass is more widespread among newly dx), but a study suggests that it can occur even before MS has been dx (article in July 12, 2011 issue of Neurology mag) Results were from a study that confirmed that newly dx ppl were over 50% at a risk than the controlled group. Before this study, scientists thought that PwMS were at a greater loss of bone density due to lack of exercise b/c of mobility issues. Researchers suggest that getting adequate amounts of Vit.D (&calcium) is essential and low levels are a risk factor for developing MS.

another article is about 52 genes that have been identified that have been inplicated in MS. 2 of these genes are linked to Vit. D.

They also state that the MS society is funding a new clinical trial of vit D supplementation but doesn't say when these will begin.

[jumpinjiminy]

I've been taking 10,000 IU of D3 for several months now. I was taking it every other day, but at my physical last month, my Vit. D level was 36 (up from 26 a year ago), but my PCP wants my level to be over 40, so she told me to take it every day. Before the 10,000 IU dose, I was taking 2,000 IU every day for about a year (since I had the test that was 26 and my doctor had me take the 50,000 IU a week pill.) I do feel better since I've been taking Vit. D3. I used to have flare ups every couple of months, but now I only have maybe two a year, and the residual symptoms don't seem as bad either.

This is good. I was still early into the D3 when the last little flare up seemed to come along. That was around the turkey holiday and ending right after Christmas. It only took a couple of months with D3 at 10,000 IU/day to get my level up to 66. Even with my thyroid going hypo again, I'm still feeling better than before taking the D3. Still some minor residuals, but they're fading out.

Wouldn't it be nice to have such a simple, inexpensive solution? Although, if D3 supplementation is eventually shown to be as or more effective against MS as/than DMDs, I would expect the cost to rise significantly - or come under patent somehow.