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MS and Vitamin D3
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glo1572 posted:
My husband at age 65 was recently diagnosed with PPMS. It has been suggested from some other exchange I have been reading that taking megadoses of Vitamion D3 to get the vitamin D blood level up to >100 and then maintaning it at about the 100 level can stop the occurence of new active lesions and the progression of the disease. I was looking for others experience in this area.
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swampster1952 responded:
Hello glo1572,

I have been taking 8,000 I.U. of Vit. D3 for about a year now. It is just part of my daily vitamin regime. I can't really say what effect it has had on my MS since I have been on Tysabri for a little over 3 years.

As far as I know there is no "unsafe" level of how much is to much to take per day so I figure why not take a large amount every day.

Dave
 
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futileexercise replied to swampster1952's response:
I was diagnosed RRMS in 2000, but didn't start any treatment until 2004, after my second major exacerbation (which stopped my denial). Later that year, I started Copaxone, and it seemed to be controlling my wayward immune system's attacking my CNS. That was until 2008, when my neurologist had me add CellCept 2000 mg. daily. I was wary of this, as it is an immunosupressants primarily used for transplant patients, to ward of the body's rejection of transplanted organs. I admit, I didn't know that much about this drug, but it was quite expensive (in addition to my exorbitant copay on Copaxone, I was primarily working to support my meds). Then in fall of that year, I contracted a upper respiratory virus, and opted out of using this addition to Copaxone (as I thought I needed some type of immune response to this virus). My next MRI showed new lesions, and we decided to switch to Rebif from the Copaxone. I had been on Rebif from May 2009 until December 2009, and my next MRI didn't show significant improvement. I didn't want to switch meds until I'd given Rebif 1 year, so my neurologist convinced me to go back on the immunosupressants at a lower dose (1000 mg. / day), after explaining to me that it didn't eliminate immune response, just dampened it. Plus, he suggested that I add 1000 IU of Vitamin D, as well (he also explained there is no toxicity in mega-doses of this vitamin). I got good new with my last visit, and his analysis of a more recent MRI (since this new combined regime) -- NO NEW LESIONS! So, I take 1000 IU of Vit. D daily, and thankfully now there's a generic of the immunosupressants that are dramatically less costly (plus, my copay on the Rebif is, thankfully, manageable). I don't know if the addition of the Vit. D alone helped me, but it definitely worked in combination of the other 'drugs' (plus, it's recommended for men over 50 to increase their vitamin D, and since I turned 50 a couple years ago....). :^)

David
 
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futileexercise responded:
I was diagnosed RRMS in 2000, but didn't start any treatment until 2004, after my second major exacerbation (which stopped my denial). Later that year, I started Copaxone, and it seemed to be controlling my wayward immune system's attacking my CNS. That was until 2008, when my neurologist had me add CellCept 2000 mg. daily. I was wary of this, as it is an immunosupressants primarily used for transplant patients, to ward of the body's rejection of transplanted organs. I admit, I didn't know that much about this drug, but it was quite expensive (in addition to my exorbitant copay on Copaxone, I was primarily working to support my meds). Then in fall of that year, I contracted a upper respiratory virus, and opted out of using this addition to Copaxone (as I thought I needed some type of immune response to this virus). My next MRI showed new lesions, and we decided to switch to Rebif from the Copaxone. I had been on Rebif from May 2009 until December 2009, and my next MRI didn't show significant improvement. I didn't want to switch meds until I'd given Rebif 1 year, so my neurologist convinced me to go back on the immunosupressants at a lower dose (1000 mg. / day), after explaining to me that it didn't eliminate immune response, just dampened it. Plus, he suggested that I add 1000 IU of Vitamin D, as well (he also explained there is no toxicity in mega-doses of this vitamin). I got good new with my last visit, and his analysis of a more recent MRI (since this new combined regime) -- NO NEW LESIONS! So, I take 1000 IU of Vit. D daily, and thankfully now there's a generic of the immunosupressants that are dramatically less costly (plus, my copay on the Rebif is, thankfully, manageable). I don't know if the addition of the Vit. D alone helped me, but it definitely worked in combination of the other 'drugs' (plus, it's recommended for men over 50 to increase their vitamin D, and since I turned 50 a couple years ago....). :^)

David
 
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Jennr5 responded:
Hi, My husband was diagnosed with ms last fall and has been taking Vitamin D from diagnosis. He takes 50,000 miu each week. His last mri showed no new leisons and he is doing well. He also is on Rebif. Because he is taking high doses of vitamin D he does have bloodwork done every month to check his vitamin d levels and kidneys.
 
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glo1572 replied to Jennr5's response:
Thanks to all for your input!


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