Tagged: 

  • Matthew Lafleur

    Member
    January 22, 2019 at 12:28 pm

    Nice! Is it easily available? Have you any experience with it?

  • Gunnhild

    Member
    January 22, 2019 at 2:38 pm

    Congrats on this forum!! Good job!☺️

    Are you planning to start on Etravirine Jonathan?

    I’m trying to start asap. I know two people starting this week!

  • Jonathan

    Member
    January 22, 2019 at 3:37 pm

    I don’t have any experience with the drug. This research is just in vitro, and sure, FA cells were used, but the cells weren’t from heart or nerve tissue. I’d like to see the experiment repeated with those cell types.

    If the results remain encouraging, then skip mouse models (which really aren’t good FA models anyway), and move onto patient trials. In those trials, an appropriate dose can be determined.

    Until then, dosage is a mystery. And etravirine isn’t without its own risks.

    • Matthew Lafleur

      Member
      January 22, 2019 at 3:48 pm

      First day of the forum and already finding new information. Kudos, man.

  • Jonathan

    Member
    January 22, 2019 at 3:59 pm

    Yeah, even Dr. David Lynch wrote an opinion about it the day after the research was published. I hope he and FARA can expedite funding to arrange further research.

    • Frankie Perazzola

      Member
      January 22, 2019 at 4:20 pm

      I agree 100% with you after reading this piece! Fingers crossed they can make some kind of headway and collab to make it happen.

  • Gunnhild

    Member
    January 22, 2019 at 4:05 pm

    Agreed about skipping the mice. Nerves and heart cells will never happen I think. We need to see how it actually affects humans with FA. So human trials should be next, yes.

    Meanwhile I will try it and see for myself☺️ Every drug have side effects.

  • Jonathan

    Member
    January 22, 2019 at 4:08 pm

    When you do, please share details!

  • Gunnhild

    Member
    January 22, 2019 at 4:15 pm

    I will let you know!

  • Matthew Lafleur

    Member
    January 24, 2019 at 12:08 pm
  • Jonathan

    Member
    January 24, 2019 at 12:32 pm

    LOL, yeah, so old.

    I’m glad FAN pub’d it. Patients should see it. Although, and this is me being honest but critical, the author should write in a manner that his audience can easily understand. Break it down (even the methods and materials) into plain language because most patients and parents (etc.) aren’t science students.

    • Matthew Lafleur

      Member
      January 24, 2019 at 12:54 pm

      Good call JD. I know that the goal is to make the articles readable to everyone but I am glad I am not the only one who sometimes has trouble following all of the scientific stuff.

  • Gunnhild

    Member
    January 24, 2019 at 1:38 pm

    I feel that the scientists are happy to explain when I email them. There is often an email attached in the author list below the heading 🙂

  • Shandra

    Member
    January 24, 2019 at 10:13 pm

    If anyone would like the full journal article (only the abstract is available for free), I have linked it here. 🙂 Science should definitely be accessible to everyone and I love that FAN takes the time to report on these articles.

    • Matthew Lafleur

      Member
      January 24, 2019 at 10:23 pm

      I don’t know if I am doing it wrong, but I don’t see the link.

    • Frankie Perazzola

      Member
      January 25, 2019 at 1:50 pm

      Cant see the link, can you resend!?

  • Jonathan

    Member
    January 25, 2019 at 2:02 pm

    The full articles are in PDF format which can’t really be posted in the forum.

  • Shandra

    Member
    January 25, 2019 at 3:05 pm
  • Paul

    Member
    January 28, 2019 at 11:40 am

    Is there any way to read what Dr. Lynch wrote on the subject? Is anyone planning to take this before it is tested on a human FA model?

  • Jonathan

    Member
    January 28, 2019 at 11:48 am

    Yes. Shandra, would you mind uploading Lynch’s response to that Google Drive and posting a link to it?

  • Matthew Lafleur

    Member
    January 28, 2019 at 12:02 pm

    I think I got it. It is 2019, right? I should be able to post Dr. Lynch’s article: I hope this works.

    @jonathan , @shandrajamie, @pauldufrene

    • Paul

      Member
      January 28, 2019 at 1:45 pm

      Nice, well I felt like that read promising. This will at least be a blueprint for a treatment. I feel changes are coming in the next few years!

  • Gunnhild

    Member
    January 28, 2019 at 12:36 pm

    I plan to start this week if my doctor agrees. Two people that I know already started last week!

  • Jonathan

    Member
    January 28, 2019 at 1:14 pm

    Gunnhild, what dose are they using and is it more than once per day? Also, on what exact date did they begin?

  • Gunnhild

    Member
    January 28, 2019 at 1:45 pm

    The drug is called Intelence in europe. The recommended dosage is 200 mg two times per day with meals.
    They started last wednesday and friday.

    • Paul

      Member
      January 28, 2019 at 1:50 pm

      I know it is soon but have they noticed anything? I thought I read about frataxin increase over 90 or so hours? I mean I know you wouldnt start walking but maybe increase energy or difference in motor skills?

    • Matthew Lafleur

      Member
      January 31, 2019 at 5:21 pm

      Sorry to bug you, @gunnhild is the most popular person in the forum now. I researched and saw that the recommended dosage for etravine for HIV patients is 200 mg per day. Do your friends really take double the prescribed dosage daily?

  • Gunnhild

    Member
    January 28, 2019 at 2:19 pm

    Yes they both did! We almost dont dare believing it! Energy, improved speech, toe wiggeling, normal temperature and colour in feet and hands, stronger, improved balance… I’m very excited to try for myself. I hope I dont have any side effects that stop me from taking it and fingers crossed for some effects🤞🏼

    • Matthew Lafleur

      Member
      January 28, 2019 at 2:28 pm

      Man I have tears in my eyes. I am trying not to be too hopeful, but this seems incredible.

    • Shandra

      Member
      January 28, 2019 at 5:57 pm

      Hi! I was wondering if the people taking it are documenting the effects they feel? Like photos/videos.

      If the drug is doing good it would definitely help move things along in terms of having official human trials if the people taking it in Europe shared the proof of their experiences with researchers here. Also I’d love to follow their experiences. I am a science student but also a hopeful FAer 🙂

  • Kathryn hansen

    Member
    January 28, 2019 at 2:34 pm

    Is it available in the US? What ages have been tried?

  • Gunnhild

    Member
    January 28, 2019 at 2:57 pm

    Me too😭😍 Scared to believe it.
    The norwegian drug has dosage recommendations down to 6 year olds.

    There are a few side effects so everybody should really look into it before deciding to try.

    The two people taking it now dont have side effects at this point. So fingers crossed!🤞🏼

  • Jonathan

    Member
    January 28, 2019 at 3:58 pm

    Those results are awesome. And now for two uncomfortable problems…

    1. In the United States, 60 tablets of etravirine (a single month’s supply) is roughly $1500.

    2. Even if I can convince my doctor to prescribe it, I highly doubt insurance will help pay for it (unless I’m diagnosed HIV+).

    • Matthew Lafleur

      Member
      January 28, 2019 at 4:44 pm

      I’m with you homie. That part is really discouraging. But I guess at this point what we can really hope for is good outcomes. If there is some I don’t think there is any way people can stop us from requesting it

  • Jonathan

    Member
    January 28, 2019 at 7:34 pm

    “…I was wondering if the people taking it are documenting the effects they feel? Like photos/videos.”

    I want to suggest collecting data via a 9 Hole Peg Test (9HPT). It’s simple. Basically, get a baseline measurement by timing it with no drug. Record the time. Then after taking drug for a week, re-test. Record the time. Repeat. Maybe do 10-12 tests. Do NOT practice between tests.

    Gunnhild, would you?

Page 1 of 7

Log in to reply.