• Opinions on Etravirine?

    Posted by Matt Lafleur on May 28, 2019 at 8:17 am

    I saw an FA patient on social media who seemed to place all of his hope in etravirine, and hoping that with enough money, every FA patient can begin taking etravirine.

    I have mixed feelings.

    On one hand, I am excited and encouraged by the personal anecdotes I hear from FA patients taking etravirine. Hearing about improvements, even small ones, are SO exciting for people with FA.

    On the other hand, I know the upsetting effects of putting your hope in one treatment for FA. I don’t want my friend to be devastated if it doesn’t work out.

    What do you think?

    Matt Lafleur replied 5 years, 1 month ago 4 Members · 7 Replies
  • 7 Replies
  • Shandra

    Member
    June 3, 2019 at 11:09 am

    I 100% don’t think it’s something to put all hope in. There are much more exciting things in development 🙂 but this might end up being a drug that works alongside another drug to alleviate some of FA’s progression (synergistic benefits). That would be exciting while we wait for something that really targets the root of the problem. And since we have nothing right now, that’s awesome!

    • Matt Lafleur

      Member
      June 3, 2019 at 11:21 am

      I absolutely agree with you. Intellectually that is. But it’s so easy to get emotionally attached, at least it is for me.

  • Giulio Carcano

    Member
    June 5, 2019 at 10:08 am

    It is easy to create false expectations in us, how many times it has already happened, I hope that etravirine is something positive, my son is 30 years old and has been in a wheelchair for 19 years, the hope is great for a change.

    • Matt Lafleur

      Member
      June 5, 2019 at 10:13 am

      I am very similar to your son. I m 33 and have used a wheelchair since I was 18. Where are you guys from?

  • Giulio Carcano

    Member
    June 5, 2019 at 10:32 am

    Italy, Lake Como, very pleased to read you

  • Malcolm Long

    Member
    June 13, 2019 at 1:26 pm

    Hi All,
    Just registered today and have been following progress on etravirine as well as Diazoxide. Both these have been picked up for research:

    • Diazoxide (Carlo Marobbio, Bari, Italy) – mitochondrial K channel activator that
    increases frataxin expression
    • Dimethyl fumarate (DMF) and Resveratrol (Gino Cortopassi, UC Davis) – to
    increase frataxin expression
    • Etravirine (Alessandra Rufini and Roberto Testi, ‘Fratagene’, University of Rome
    Tor Vergata) – to increase frataxin expression

    Above documented by Brunel University in London.

    • Matt Lafleur

      Member
      June 13, 2019 at 2:41 pm

      I’m not familiar with anything but etravirine. Please keep us posted1!

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