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Dear Dr Cannell: lupus and scleroderma

Posted on: September 5, 2011   by  John Cannell, MD


Dear Dr. Cannell:

Has there been a study how vitamin D affects patients with Scleroderma? I have a sister who died of it and now another sister who is dying from it with pulmonary hypertension.

Thank you for all you do.

Maria, Boston

Dear Maria:

To my knowledge, no randomized trials or even open trials exist, studying the effects of vitamin D in scleroderma. However, vitamin D levels in the severest form of scleroderma, systemic sclerosis, are remarkably low.

Caramaschi P, Dalla Gassa A, Ruzzenente O, Volpe A, Ravagnani V, Tinazzi I, Barausse G, Bambara LM, Biasi D. Very low levels of vitamin D in systemic sclerosis patients. Clin Rheumatol. 2010 Dec;29(12):1419-25. Epub 2010 May 9.

More importantly, just like in lupus erythematosus, direct correlation exists between the severity of the disease and levels of vitamin D. This, to my way of thinking, is presumptive evidence that vitamin D deficiency is involved in causing this terrible disease.

Vacca A, Cormier C, Piras M, Mathieu A, Kahan A, Allanore Y. Vitamin D deficiency and insufficiency in 2 independent cohorts of patients with systemic sclerosis. J Rheumatol. 2009 Sep;36(9):1924-9. Epub 2009 Jul 31.

Maria, you have already lost one sister and may lose another. While the FNB tells us we need 600 IU/day, the above study discovered such minute doses have no effect on vitamin D levels. Your sister needs 20,000 IU per day for a month, then 10,000 IU per day until her 25(OH)D is around 80-90 ng/ml.

I do not know what effects such supplementation will have on your sister, if any. I suspect it may halt the progression of the disease, but I have no way of knowing that for sure. However, the important point is the risk/benefit analysis and such an analysis leads anyone to the above recommendations.

Dear Dr. Cannell:

I have lupus, and I started with five thousand, and I just keep getting better and better. I am now up to twelve thousand IU, which has gotten rid of my discoid lesions. I will not go higher for fear of kidney damage and high levels of calcium, but it is amazing. Using D3.

Jean, Minnesota

Dear Jean:

Great news. There is probably no reason to exceed 10,000 IU/day. However, if you are overweight, your 25(OH)D level may still be inadequate, so be sure to check your blood levels when you can. For $65.00, ZRT will send you a test kit, you collect some blood on a blotter paper and ten days later, you know your vitamin D level. This is the only way to truly know how much vitamin D you should be taking.

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