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Etravirine…
https://www.ncbi.nlm.nih.gov/pubmed/30624801
The drug’s 10+ years old. Designed originally to treat HIV. Safe. Potential therapeutic.
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203 Replies
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Nice! Is it easily available? Have you any experience with it?
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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!
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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.
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First day of the forum and already finding new information. Kudos, man.
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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.
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I agree 100% with you after reading this piece! Fingers crossed they can make some kind of headway and collab to make it happen.
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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.
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When you do, please share details!
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I will let you know!
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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.
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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.
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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 🙂
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I don’t know if I am doing it wrong, but I don’t see the link.
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Cant see the link, can you resend!?
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The full articles are in PDF format which can’t really be posted in the forum.
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Hmm I don’t know what happened, sorry lol:
https://drive.google.com/file/d/1Q4zZ8NIcMFszr310LC250ajPNJ1t9cOY/view?usp=sharing
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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?
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Yes. Shandra, would you mind uploading Lynch’s response to that Google Drive and posting a link to it?
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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
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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!
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I plan to start this week if my doctor agrees. Two people that I know already started last week!
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Gunnhild, what dose are they using and is it more than once per day? Also, on what exact date did they begin?
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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.-
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?
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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?
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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🤞🏼
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Man I have tears in my eyes. I am trying not to be too hopeful, but this seems incredible.
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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 🙂
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Is it available in the US? What ages have been tried?
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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!🤞🏼
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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+).
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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
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“…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?
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