• matt-lafleur

    Member
    January 23, 2019 at 7:47 pm

    I used to take it- it’s been over ten years though. Glad people still talk about it. Anyone currently taking it?

  • shandra

    Member
    January 25, 2019 at 5:01 pm

    When I was first diagnosed, I was a child so I didn’t make my medical decisions lol. My parents had me take it for about 5 years. Then, I enrolled in a clinical trial and had to discontinue Idebenone for the trial. I never started back on it again afterwards, and I personally experienced no difference in progression rate or cardiac stability. It has been almost 4 years now that I have been off of it and any other supplements.

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