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Etravirine…
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Hi Chris,
Ilva’s mother has noticed a big improvement in dysarthria and energy level.
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Hello Everyone,
Really appreciate all the updates. We were wondering if taking etravirine now, could it have any negative effects on trying gene therapy (that may use a virus as a vector to introduce the new gene into the cell) down the road ?
Thanks Rich-
No idea but it is a good question. @shandrajamiemight be the best one to have theories on that?
Vaccines are also anti viral. Would be surprised if it would affect future gene therapy.
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Hey Rich that is a great question. Obviously the mechanism of why Etravirine affects Frataxin regulation is unclear. So it makes sense to wonder if it could affect gene therapy. If you took them at the same time, it might. But you wouldn’t be taking them at the same time.
Etravirine isn’t a one-and-done drug. HIV patients have to continually take it for that reason. The half-life of the medicine is about 41 hours (give or take 20). So in other words if you stopped Etravirine right now, it would 100% be out of your system within a week at most. When gene therapy comes to trials, you will be cleared off anything that could even potentially affect the efficacy of it. Etravirine only acts in your body for a few days, so if you stop taking it before getting gene therapy you should have no issues!
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Dear Shandra.
Thank you for the reply to my question regarding possible interactions with Gene Therapy.
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Hi Rich,I do not know the answer to your question, but gene therapy seems to be less accessible to patients soon.
I have a question about all taking etravirine … did you already have blood tests? Any negative ??
The doctors I consulted about are concerned about the effect of the drug on the liver and kidneys.-
The father of man with FA talked to a doctor at the Immunological departement in a hospital in Oslo. De doctor use etravirine in HIV treatment. The father was concerned about side effects. This is what the doctor said;
Etravirine is not considered to be one of the “bad boys” for getting side effects. Many of the more serious side effects have come in patients who take many antiviral drugs at the same time. (As they do in HIV)
He suggested to just test it for about 2 months and how it goes. Take blood tests for the liver, kreatinin and so on.I plan to do a blood test next week.
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@gunnhild Hope you are good. We are looking forward to hair from you!
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Yes Elsaid, time for update 🙂 It’s day 24 on entravirine. Things keep happening. Climbing the stairs keep getting more elegant 😛 I have better control of my ankles. Today I walked a lot outside and it felt very easy and much more balanced. I was amazed by the increase in speed that I’ve had! My sister filmed it, but I think it might not be a point sharing it here as “proof” since I don’t have a video of my outside walking from before etravirine.
One thing I just realized is that my sitting stability is much better. Before I had balance issues when I sat and lifted my feet to put on socks or shoes. Now that is not a problem. Very happy 😀
No side effects apart from the chills that is not very strong anymore.In her blog Ilva talks about how she feel that things are happening to her brain. I think I understand the feeling now. It’s like the head is clearer in a way. More powerful and awake.
I hope everyone taking etravirine will share here. I think it is important that we talk about the side effects too if we have any. We need both sides of the story.
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Gunnhild, I really appreciate all that you’re sharing — it’s exciting! You mentioned that your diagnosis was at 31, so my guess is that your ataxia symptoms became apparent in your late 20s. You’re 40 now, which is at least 10 years of late onset progression. 1. Do you recall your triplet repeat numbers from diagnosis? 2. Do you rely on anything like a cane, walker, or wheelchair? Thanks!
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My first symptoms started at 16-17 years old actually. Two neurologists declared me healthy during the next 25 years.(when I was about 19 and 26). Finally they got it in 2009, but then my symptoms were more obvious. I have around 400 – 500 triplets on the two alleles. So not much. I use a cane, support of other person, the walls/furniture and a wheelchair.
I must also mention that I have hyper reflexia which is the opposite of most FA-ers. I think that helps me a lot.
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Gunnhild, can you stand without any support (from devices, furniture, walls, etc.)? If so, how much time (e.g., 2-15 seconds before falling or reaching for support)? Can you take any steps without any support (e.g., 2-5 steps before falling or reaching for support)?
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@jonathan i haven’t start etravirine yet, but i measured what you said earlier
1- i stand without support 40 seconds and that’s in a moving elevator
2- i can do 6 or 4 steps no help so average 5
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Do NOT get injured trying to measure these abilities! 😛
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No I just broke my leg… just kidding 😉
I dot know the limit to how long I can stand without support. Probably for minutes. 5-10 I dont know. Walking without support; 1 or 2 steps… I’m weird 😛
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lol @gunnhild 😛 i guess i can for 3 minutes or 5 maybe 10 tough i didn’t try it i have no time
i just tested it at the elevator minutes ago and i was so tired
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Hi!
Just wanted to say that everything I said I noticed an improvement on in my blog post, I still feel all of those improvements today (one moth after starting on Etravirine) 🙂 -
Dear Ilva, thanks for te wonderful news!!!
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The fact that you dont need insulin now makes it so much interesting! Its hard for placebo to be the reason for that 🙂
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Ous, what happens with you? Start Etravirin?
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hello @dobiiv2 i started etravirine yesterday i see few differences but i prefer to wait a week before a full report
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Olá! obrigada por me aceitarem. Minha filha de 20 anos tem FA e vai começar a tomar o Etravirine, estamos aguardando o remédio chegar… Estamos fazendo vídeos do antes do remédio, para comparar com o depois… Estamos muito ansiosos… Somos do Brasil!!!!
Hello! thank you for accepting me. My 20 year old daughter has FA and will start taking etravirine, we are waiting for the drug to reach … We are doing the videos before the medicine to compare with later … We are very excited … We are from Brazil !! !!
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That is exciting news Luciana! 🙂 What is the price for one month treatment in Brazil? Is it her neurologist that prescribed it?
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@killerous47 How much does it cost in Turkey? its name? How many tablets/mg on the package?
I can’t find it in Egypt. -
Hi all,
My neurologist will not write me a prescription as there hasn’t been a phase 3 trial with etravirine and FA. Now that i’ve heard all your promising stories here i do not want to wait for a couple of years. I have been waiting for 22 years now, that’s enough to me. Without a prescription it is gonna be very hard to get etravirine though. Has anyone managed to get this without a prescription? Somewhere in the world? I’m from the netherlands. -
In Turkey cost for Intelence is 300 euro 60 tablets. We wait tomorrow the drug and and start.
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The dose should be 100 mg twice per day, so what is the quantity of each tablet?
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No, it’s twice 200 mg, so that’s what you need
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@Rogier Right!
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With or without a prescription?
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RRoger, in Turkey and Russia, but you need ss`omeone to bye and send you.
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Hi everbody 🙂
A lot of people interested in Etravirine read this forum and then have a lot of questions. You can become a member and ask your questions here. It will help other people to read the whole discussion here.
If you have trouble logging in you can click on the button on the right, the one with an envelope on it, and send a message to the moderators. They can help you.
Somebody is asking me what trial I am in. I just want to clarify that I’m not in a trial. I’m doing this on my own to see if Etravirine can benefit me.
And lastly an update: I ‘ve been taking Etravirine (drug name Intelence) for a month now and things keep happening. What makes me very happy is that overall stability has improved and also walking! I can almost not believe it, and I’m very excited to see if it keeps improving in the future.
I realized yesterday that I haven’t had any caughing incidents in one month. Feels like I have more sensivity in my throat… If that is the case, that makes me very very happy 🙂 Eating stresses me out because of the coughing.
The last two days walking down the stairs has been much easier. I had almost no rigidity in my muscle on my way down. I smiled all the way 😀
Fingers crossed for more effects to come!
Any news from others taking Etravirine?
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That is great news! Are there any other side effects you’re feeling besides chills? Or did those already stop too? Was the blood test fine?
Thanks for the updates!
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Chills and a light pressure over my ears is what I´ve noticed. But the last 2 weeks I’ve rarely noticed it. I will take blood tests next week. For now everything feels just fine in the body 🙂
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ThanksGunnhild, any updates from Ilva, Ous, Michelle?
My son start 4 days ago.No side effects and today he said that feels more stable and strong. His Neuro is not agree but we do on our risk. -
Hi, gays, why nobody write? MICHELLE, Ous?
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I have no updates as of now! I hope to start working out by next and have more improvements. I still have the ones that I spoke about earlier but nothing new! I also have other things going on that is not FA related. The medicine is working but who knows when I will make more improvements.
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Hello everyone, any children taking Etravirine? My son is 11 and all these good news make us want to try. He really wants to play football again 🙂 Thanks!!
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Olá a todos
Obrigada por me aceitarem no fórum.
Sou de Portugal.
FA desde 2008
Tenho 30 anos de idade
Ando de cadeira de rodas
Dia 12 de Abril tenho neurologista. Vou lhe pedir para iniciar Etravirine. Penso q vou conseguir.
Vou actualizandoHello everyone
Thank you for accepting me on the forum.
I’m from Portugal.
FA since 2008
I’m 30 years old
I ride a wheelchair
April 12th I have a neurologist. I’ll ask you to start Etravirine. I think I can do it.
I’ll update-
Hi Sandrine,
any news about your appointment with your neurologist? Please let us know, thanks!
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Sorry Sandrina,
I mistakenly read March 12 instead of April 12…
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