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Can vitamin D slow the progression of ALS?

Posted on: August 3, 2013   by  John Cannell, MD

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Amyotrophic lateral sclerosis (ALS) is a debilitating disease characterized by rapidly progressive weakness, muscle atrophy, muscle spasticity, difficulty speaking, difficulty swallowing, difficulty breathing and eventual death. Amyotrophic comes from the Greek language: meaning “no muscle nourishment.”

It is known as Lou Gehrig’s disease in the United States after the famous New York Yankee. On June 2, 1941, two years after his retirement from baseball, Lou Gehrig died at his home in the Riverdale section of the Bronx, New York. At his retirement he said,

“Fans, for the past two weeks you have been reading about the bad break I got. . . Yet today I consider myself the luckiest man on the face of the earth. . . When you have a wonderful mother-in-law who takes sides with you in squabbles with her own daughter — that’s something. When you have a father and a mother who work all their lives so that you can have an education and build your body — it’s a blessing. When you have a wife who has been a tower of strength and shown more courage than you dreamed existed — that’s the finest I know. So I close in saying that I might have been given a bad break, but I’ve got an awful lot to live for. Thank you.”

As to whether vitamin D plays a role in ALS, if anything, studies show people born in the summer are more likely to develop ALS and there is no latitudinal gradient in ALS incidence. The incidence of ALS is lower in African Americans (not higher) than it is among Whites. Therefore, the epidemiological data do not support a role for vitamin D in ALS.

Defects in superoxide dismutase, a powerful antioxidant in the body, has been associated with ALS. As an aside in a vitamin D and gene repair paper, Halicka et al recently showed that superoxide dismutase is induced by activated vitamin D. It was not clear to me from the paper if the gene for superoxide dismutase is directly upregulated by the secosteroid, activated vitamin D.

Halicka HD, Zhao H, Li J, Traganos F, Studzinski GP, Darzynkiewicz Z. Attenuation of constitutive DNA damage signaling by 1,25-dihydroxyvitamin D3. Aging (Albany NY). 2012 Apr;4(4):270-8.

Vitamin D: Protecting against DNA damage. Posted on December 26, 2012 by John Cannell, MD.

Recently, Doctor Chafic Karam and colleagues of the Mayo Clinic College of Medicine, working under senior author Professor Stephen Scelsa of the Albert Einstein School of Medicine, published a little reported study on whether vitamin D supplementation had any beneficial effect on ALS. In a just released retrospective study (not a randomized controlled trial), they studied 37 consecutive patients with ALS, 20 of who took 2,000 IU of vitamin D3 for up to 12 months.

Karam C, Barrett MJ, Imperato T, Macgowan DJ, Scelsa S.  Vitamin D deficiency and its supplementation in patients with amyotrophic lateral sclerosis. J Clin Neurosci. 2013 Jun 28.

The initial mean vitamin D level of the ALS patients was 22 ng/mL. Eighty-one percent of patients had a vitamin D level lower than 30 ng/mL and 43% had a vitamin D level lower than 20 ng/mL. All patients who received vitamin D supplementation had a vitamin D blood level less than 30 ng/mL. However, not all patients with vitamin D levels lower than 30 ng/mL received supplementation, as it was offered at the discretion of the treating physicians and depended on practice variability.

The neurologists recorded a measure of ALS severity (ALSFRS-R) at the beginning and every 3 months thereafter. Patients were examined every three months by the same neurologists. The median vitamin D level at 6-month follow-up rose from 18 at baseline to 31.0 ng/mL.

The ALSFRS-R scores in all patients declined. However, by 9 months, the scores had declined significantly less in the vitamin D group (p=.02). Taking vitamin D supplements showed a trend to better  ALSRFS-R score at 3 and 6 months after adjustment for age and baseline vitamin D levels (p = 0.07 and p = 0.09, respectively).

The authors concluded:

“Patients with ALS have vitamin D deficiency as do patients with other chronic neurological diseases. Whether there would be a benefit in checking the vitamin D level and supplementing it in patients with ALS is not clear but this small study suggests a possible benefit. A prospective controlled trial with a larger group of patients and a longer follow-up period is needed to study the effect of vitamin D on the progression of disability in ALS patients.”

I found myself wondering if higher doses of vitamin D, such as 10,000 (the Endocrine Society’s Upper Limit) or even 20,000 IU/day, may have improved ALS prognosis. In my opinion, the dose of vitamin D used in a potentially treatment responsive devastating diseases should be proportional to the severity of the disease, and ALS is a devastating disease. However, high doses run the risk of being harmful in that specific disease. There are no studies of high doses in ALS. The treating physician needs to do a risk-benefit analysis on very limited data.

While using 20,000 IU/day may sound reckless, it is simply using vitamin D as a drug, using pharmacological doses to see if it has a treatment effect (and would require a health care professional’s oversight). So far, everything we know of the mechanism of action of vitamin D suggests higher doses may help and there appears to be no down side to pharmacological doses except for potential hypercalcemia.

20,000 IU/day may give a few people hypercalcemia so 25(OH)D levels, serum calcium and urine spot calcium to creatinine ratios must be obtained monthly. However, if such doses appear effective, then tolerating a little hypercalcemia is preferable to the nightmare that is progressive ALS.

2 Responses to Can vitamin D slow the progression of ALS?

  1. Rita and Misty

    Dr. Cannell,

    What a hopeful article! Thank you.

    If I may quote from your article:

    “While using 20,000 IU/day may sound reckless, it is simply using vitamin D as a drug, using pharmacological doses to see if it has a treatment effect (and would require a health care professional’s oversight). So far, everything we know of the mechanism of action of vitamin D suggests higher doses may help and there appears to be no down side to pharmacological doses except for potential hypercalcemia.”

    I agree with you that vitamin D may help ALS (as well as so many other diseases and conditions), with the only possible down side being hypercalcemia. And like you, I think mild hypercalcemia is much preferable to any disease state which may be kept at bay by pharmacological doses of D3.

    I’m not a healthcare professional (though I wish I were), but in my opinion, I think that it is the 25(OH)D level that counts rather than the daily dosage. Perhaps those with health conditions such as ALS, autoimmune diseases and cancer need to keep their vitamin d serum level around 150 ng/ml? These are only my musings… I wish I had the scientific background to say more definitively. I am open to your thoughts on this for sure.

    By the way, I spent some time at a community fair today chatting up vitamin D. I met someone suffering from diabetes II and high blood pressure. She asked me what an optimal 25(OH)D level would be. I gladly shared my information with her: 50 ng/ml–80 ng/ml, and I proudly suggested that she take a cyberspace field trip to the Vitamin D Council.

    Then she mentioned that her mom has colon cancer, and she asked me what an optimal 25(OH)D would be for someone suffering from cancer. I sadly couldn’t give her any recommendations here. I wanted to give her my opinion, but I do know that I am not a physician or healthcare professional. So, I succeeded (for once) at keeping my mouth shut.

    By the way, she also asked if I knew of any local area oncologists who are vitamin D savvy. I wasn’t able to help her with this request either.

    This was a bit disheartening for me, as I always like to be helpful.

    I love the graphics for this article. We need to wish for success in ending this very serious public health issue–imo, it is the most serious public health issue of this century.

    I will make a wish that within the next 50 years vitamin d deficiency will be ended; and that physicians will be utilizing pharmacological doses of D3 to treat illnesses. I know 50 years is a bit optimistic, but it is my wish, and tonight I am Pollyanna.

    Be well,
    Rita

  2. rcbaker200@comcast.net

    I wonder if anyone will do a similar study but however will raise the vitamin D level not just to 31 ng. but to at least 50 to 70 ng? Based on studies in many other serious illnesses, there would be every reason to suspect the results would be significantly better.

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