-
Etravirine…
-
Vincent, my son is 16 , he use Etravirin from 8 days, no side efects, somethimes feels sleepy, on 4th day he say that easy stand up from chair but thats all for now.
-
Thanks for the update @dobiiv2 Fingers crossed for much more effects to come.
Ousama is travelling in Europe for 2 weeks. He says he has effects and he will update us when his holiday is over and he’s back at his computer 🙂 -
Hello does anybody have a telephone number or a link for a pharmacy in Turkey that can send me Etravirine in the post. Thank you 🙂
-
@dobiiv2 how is your son doing? Did he notice some progression by now?
-
Hi all, Alex 2 weeks on Etravirin.
I can’t say very much because last week Alex was little sick, have feever, runny nose and couth, but he says that feels better. Hands fine motor is better and he stand up from chairs easy.
That’s all for now, hope more improvement next week’s. -
My daughter started taking etravirine day 11/03, imported and paid IN BRAZIL CURRENCY (REAL r $) r $ 1587.00. Follows the diary that my daughter is doing:
early Etravirina- 2X remedy a day – 100mg11/03
During the day I started a physical therapy protocol with transcranial stimulation (in which I take the shock cord and cerebellum for half an hour).
In recent years no longer felt muscle pain in the lower limbs, even taking heavy in physical therapy …. On this day at 23:00, could not sleep because I was in pain in my muscles. And he was well electric, was not feeling tired as always I then started to notice feet with normal temperature, ie the circulation improved, because before my feet were “dead”, very icy.12/03
Upon awakening, as was the custom; had to wait sitting on the bed all the spasms in the legs calm down, but to get up only presented one to stretch the body and I could follow my day.
I spent the rest of the day with some comments from people I seemed to perform the movements like sit / stand (with help), but more firmly! I write a lot during classes in college and I’ve noticed that I’m writing a little faster. I was also in the protocol.
The improvements that mentioned, being kept continuing.13/03
Improvements maintained feel firmer and performing movement as picking up objects and eat more balanced.
I realized the protocol (I’m feeling tired because of this).14/03
I woke up very well, more willing and I’m doing a lot more firm strokes (still need help, but who helps me says that support appears to be lighter).
I realized the protocol today.
Improvements mantidas.Estou and warm, the whole body (not just the feet) I was out of the car I was standing with one hand resting on the door.
I’m not knocking any food on my lap in the table at meals.15/03
Improvements cited above still exist.
Today I am tired due to the protocol.
We are seeing that I am raising over the foot, because at the end of the day the bathroom rug was not rumpled as usual. I’m having more control in the trunk and I am not “falling” or playing me when I sit.
Voice is better, more fluid.
I’m feeling less sensation in the feet, a test was carried out through fingers on my feet without chills or spasms.16/03
Improvements aforementioned still maintained.
I’m TPM, and an ataxic this period is very bad, is really tired and I am also the resting Protocol tired enough. So it was for me to be very very tired, I’m tired, but not at this level.17/03
Remain warm, but I am ill because of PMS and protocol, I feel tired and unwilling to do anything
——————————–
Olá, desculpem-me a demora…Minha Filha começou a tomar o Etravirina dia 11/03, importei e paguei NA MOEDA DO BRASIL (REAIS r$) r$ 1.587,00. Segue o diário que minha filha está fazendo:
início do remédio Etravirina- 2X ao dia – 100mg11/03
Durante o dia eu iniciei um protocolo de fisioterapia com estimulação transcraniana (no qual eu tomo choques na medula e cerebelo por meia hora).
Nos últimos anos não sentia mais dores musculares nos membros inferiores, mesmo pegando pesado na fisioterapia …. Neste dia às 23:00, não consegui dormir, pois estava com dor nos meus músculos. E estava bem elétrica, não estava me sentindo cansada como sempre sinto e então começamos a notar os pés com temperatura normal, ou seja a circulação melhorou, pois antes os meus pés eram de “defunto”, muito gelados.12/03
Ao acordar, como era de costume; tinha que esperar sentada na cama todos os espasmos nas pernas se acalmarem, mas ao me levantar só apresentei um para esticar o corpo e pude seguir meu dia.
Passei o resto do dia com alguns comentários de pessoas que eu parecia realizar os movimentos como sentar/ levantar ( com ajuda), mas maior firmeza! Escrevo bastante durante as aulas na faculdade e tenho reparado que estou escrevendo um pouco mais rápido. Também fui no protocolo.
As melhoras que citei, continuando sendo mantidas.13/03
Melhoras mantidas, me sinto mais firme e realizando movimento como pegar objetos e comer mais equilibrados.
Realizei o protocolo ( estou me sentindo cansada devido a isso).14/03
Acordei muito bem, mais disposta e estou realizando os movimentos muito mais firmes ( preciso de ajuda ainda, mas quem me ajuda diz que o apoio aparenta estar mais leve).
Realizei o protocolo hoje.
Melhoras mantidas.Estou bem quentinha, no corpo inteiro ( não só nos pés) Fui sair do carro fiquei em pé só com uma mão apoiada na porta.
Não estou derrubando nenhuma comida no meu colo nas refeições a mesa .15/03
Melhoras citadas anteriormente continuam existentes.
Hoje estou cansada devido ao protocolo.
Estamos percebendo que estou levantando mais o pé, pois no fim do dia o tapete do banheiro não estava amarrotado como de costume. Estou tendo maior controle no tronco e não estou “desabando” ou me jogando quando sento.
Voz está melhor, mais fluída.
Estou sentindo menor sensibilidade nos pés, foi realizado um teste passando dedos no meu pé, sem arrepios ou espamos.16/03
Melhoras citadas anteriormente continuam mantidas.
Estou de TPM, e para uma atáxica esse período é bem ruim, fica bem cansada e também estou descansando do protocolo que cansa bastante. Então era para eu estar muito muito cansada, estou cansada, mas não nesse nível.17/03
Permaneço quentinha, mas estou mal devido a tpm e protocolo, me sinto cansada e sem vontade de fazer nada. -
Can someone interpret the last post in English?
-
Wait…I did already.
-
-
This Etravirine sounds very positive. I look forward to hearing more positive results.
-
This is what a participant from Spain in his fourties and with LOFA said today in our whatsapp chat group dedicated to Etravirine:
“The most relevant effects I am feeling after one month and two days on Etravirine are: excess energy, better control of posture and more agility.”
-
This is excellent! Thank you Gian.
-
Buongiorno Gian Piero,volevo sapere,se è possibile, qualcosa in più sul gruppo whatsapp e nel caso come poter entrarci. Grazie
Giulio
-
-
-
An interesting observation I just read in Dr. Testi’s study:
”Importantly, we did not observe any correlation between the efficacy of etravirine and the presence or lenghth of GAA repeats.”
Before reading it I feared that Etravirine might work well only in people with a low number of triplets. Now I feel more confident that also patients with many triplets can benefit from Etravirine. -
Last and very encouraging update from Ilva’s blog. Must read.
https://lonesomesparkle.wordpress.com/2019/03/21/8-weeks-with-etravirine/ -
My 22 year old son will start etravirine today 😀.
-
Go Lynn go!!!
-
Hi guys 🙂 So much interesting going on all around the world now. Good luck to all who is just starting on Etravirine. Hope you will update here.
After almost 2 months I no longer have any side effects. The improvements are still there. (scroll up and read my previous posts). No choking in this periode. I’m very excited about that. Makes life easier. The last few weeks I’ve noticed that it’s easier to take a step backwards. For example taking a step back to be able to open a drawer in front of me. I really wish the walking would keep improving, but there have been no changes for the last month. Still hoping for more. I see that others have great walking improvements on Etravirine. That’s fantastic news 🙂
-
I was just wondering, what’s the youngest FAer anyone may know of that is trying/has tried Etravirine? I’ve read the previous posts and can’t help but become tearful with all the HOPE your experiences bring.
-
-
Thank you for sharing this!
@shandrajamie can you translate it for us dummies?-
Basically, the research group that discovered Etravirine’s potential has filed for a patent giving them the rights to develop/test this as a treatment in FA patients.
Since etravirine is already a drug on the market, it is claimed by someone for use in HIV. In FA, no one owns Etravirine, so theoretically any company could start clinical trials with it. This patent makes it so the researchers responsible for the discovery have the full rights to develop the clinical trials and one day (potentially) bring it to market and profit off it.
Looks like they filed this in September and it just got published last week…its a big step in the direction of human trials with this!
-
-
-
A patent was submitted back in September to treat FA via Etravirine. Therapeutic dose of the drug (which none of us know) has demonstrated to increase frataxin protein precursors, its intermediates, and mature form (i.e., it increases proteins that could become frataxin, it increases proteins that are about to become frataxin, and it increases frataxin protein).
If somebody is curious enough, write a BRIEF email to one of the authors in Italy asking what they suspect a therapeutic dose might be.
-
I doubt they have data on this that is shareable at this point. If animal studies have been initiated then I suspect any suggestive data is too preliminary and it’d therefore be irresponsible for them to share.
The in vitro studies suggest a dose-dependent increase in Frataxin and the patent gives them the rights to test up to 600 mg daily in adult patients. Obviously BEFORE this goes to clinic they’d need to line up adequate safety data on such a high dose. (So anyone reading this, please do not try that dose…) And there may be a plateau in therapeutic benefit at a lower dose. More doesn’t always equal better.
-
-
Section IV describes factors for dose (e.g, age, weight, health, etc.).
-
I didn’t read it all. My mistake…
“…the method comprises administering to the subject one 200 mg tablet comprising etravirine twice daily and wherein the subject is 6 years to less than 18 years of age and weighs greater than or equal to 30 kg.”
-
Hi all,
Parent of a 12 year old FA-er, who currently takes Lioresal, melatonin, and…that’s all. I’m not a biologist, but I routinely read and write patents in my field, so I thought I’d give this one a try.
From what I can read in the patent, the dose span is pretty large as it is probably targeting trials, and shouldn’t be taken as a recommendation. At least not from me!
The Italian team claims the following test doses for adults (over 18)
– between 100 and 300mg, twice daily
– 200mg twice daily
– between 50 and 150mg, twice daily
– 100mg twice dailyand for children (6 to 18) (see table 1 on page 6)
– 16 to 20kg: 100mg twice daily
– 20 to 25kg: 125mg twice daily
– 25 to 30kg: 150mg twice daily
– over 30kg: 200mg twice dailyThe most striking is that the dose you guys take (2x100mg, as far as I could read, ie. the recommended dosage for HIV+ patients) is lower, by a factor of 2, than most doses Testi et al. intend to test. It is highly probable that they derived the target daily doses from older HIV studies that examined how etravirine gets absorbed by patients, and targeted the in-vitro concentrations they found most effective on patient-derived cells.
I’ll be following this thread as it seems the most promising medication so far. My gut feeling is that the molecule is not a cure-all medication, and will rather be part of a combination therapy at some point in time. The existence of an “opportunity window” in FA seems more and more likely, so I hope children will be involved soon in trials (but I know it’s unlikely they will at first).
-
Hi I’m new…I’m so excited reading the feedback
My 15 year old son has friedrichs,I’m going to speak to his doctors about the possibility of prescribing this for him
I found this forum by accident searching about etravirine -
Ciao,questa discussione su Etravirina mi piace molto.
Grazie per tutte queste informazioni.
Mio figlio ha AF,lui ha 30 anni,stiamo cercando di reperire Etravirine/Intelence,in Italia non è facile avere questo farmaco.
Spero di leggere qui al più presto news delle persone che stanno usando questo farmaco. -
Hi guys, any updates? I was wondering if there has been more (little) progress? Is there still some improvement after a few months? Are, for example, the warm hands and feet are still there?
I am still trying to get etravirine.
-
I just want to say thank you for everyone participating in this discussion here in the forum. Lots of people google to find information about treatments for FA and they find us here. So please keep it up 🙂
As you might know I also take Imukin injections and for the last 3-4 weeks I’ve had some Imukin side effects increasing. I haven’t had any Imukin side effects for many years so I think it’s the combo that triggers it. It’s not bad. Just feeling sleepy, like a hung over and some mild flue like symptoms. Since I work full time it bothered me so much that I’m trying to find a better balance between the injections of Imukin. I now wait 2 days between every injection. Etravirine is unchanged 2 times per day. Oh well, this info might only be useful if you also take Imukin but not so interesting for the rest.
Another nice improvement I’ve noticed about Etravirine. This took maybe 5-7 weeks of treatment before I was sure of it. Bladder control is back! I don’t often hear people talk about their bladders in public but we all have it… 😛 and the nerves are controlling it very elegantly. Or at least they should. Those nerves might also get affected by FA. Anyway, it’s a very nice improvement 🙂
Anybody else care to share? 🙂
Log in to reply.