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MS and Coenzyme Q10
glo1572 posted:
Has anyone been taking Coenzyme Q10 for their MS, specifically PPMS and if so has it been helpful. If so what dosage and any side effects?

I know there is a clinical trial underway at NIH with a new drug similar to Coenzyme Q10 for treating PPMS but the results won't be known until 2016.

I am going to discuss with my doctors but wanted to get some non medical views as well.
hackwriter responded:
Hi, glo,

I took CoQ10 for several months early in my disease--I have RRMS--and felt neither a positive nor negative effect.

It, along with some other antioxidant substances such as green tea, is considered an immune-stimulant. That means it has the potential to stimulate certain immune cells that, theoretically, might trigger an attack--but only theoretically.

The medical community is not of one mind on whether MS patients should take it. Part of the reason is that nobody knows what causes MS, and partly because there have been no large double-blind placebo-controlled scientific studies done yet. If you ask five doctors to weigh in on CoQ10, You'll get five different opinions. They will either warn you against it, tell you to try it and see how you feel, agree to cautiously monitor your dosage and help with QA, confess that they don't care one way or another, or profess their ignorance of the matter and suggest you call the NMSS for advice.

Another consideration is that no two MS patients are alike in how they respond to therapies and supplements--so we can let doctors off the hook about their confusion. There's just no way to predict how CoQ10 will affect you personally.

glo1572 responded:
Kim, thanks for your input. You pretty much described our experiences to date with the medical community when discussing any alternative therapy and supplements with regards to MS.

2katies responded:
I'm in the NIH trial for PPMS on their version of CoQ10. Store bought CoQ10 is different, and tho may benefit pwMS, not in the same ways.

NIH version of CoQ10 can get inside the mitochondria where it's work could be of real value. Please check NIH site info. They are still interested in pts with SP and PP for this trial.

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