Etravirine… - Research, Science, and Trials - Friedreich's Ataxia News Forums

Rogier

Member

April 11, 2019 at 6:06 am

I always enjoy reading your updates. All this positivity, thank you!

Yes, I know what you mean and I am sure and the majority of the FAers do. During progression this has become a bigger issue for me. I am always planning the intake of fluids and the possibility of using a ‘toilet for disabled’ since i’m in a wheelchair. Also getting cold and stress speed up processes, so planning is the keyword for me.

I am very excited that even this could be better by taking Etravirine. I still don’t have it but hope to use it some time and get my bladder control back 🙂

SandrinaPT

Member

April 13, 2019 at 11:44 am

I’ve been with Dr. Leonor and she simply can not prescribe any medications you have to ask for, so we can give her medication (or not) in a controlled way. You will deeply research etravirine and it will probably take 3 months to have an answer. However it marked me consultation for 11 October. When you have an answer about etravirine contact me.
Portugal 🇵🇹

SandrinaPT

Member

April 14, 2019 at 11:53 am

I was with Dr. Leonor (neurologist) and she just can not prescribe any medication gotta ask for authorizations to be able to give us (or not) the medication in a controlled manner. Will deeply investigate the etravirine and possibly take three months to get an answer. However marked me appointment for 11 October. When you answer about etravirine contact me. Portugal 🇵🇹

Estive com a dra Leonor (neurologista) e ela simplesmente não pode prescrever qualquer medicação tem q pedir autorizações, para poder nos dar (ou não) a medicação de forma controlada. Vai pesquisar profundamente a etravirine e possivelmente demorará 3 meses a ter uma resposta. Contudo marcou me consulta para 11 de Outubro. Quando tiver resposta acerca da etravirine contacta me. Portugal 🇵🇹

Sharon

Member

April 17, 2019 at 12:12 pm

With all of this exciting news, I attempted to get on etravirine. My pc talked with Dr. Lynch and she wants me to wait. I think she’s right because of the cost, but with all of the positive results, I might reconsider in a couple months! Thanks to everyone who posts!

Luciana Carbonari

Member

April 24, 2019 at 2:15 pm

Good afternoon everyone! As I said, my daughter started taking Etravirine on 11/03 100mg 2x a day. The improvements that we experienced following Doramas: better motor coordination, improvement in balance, she was having a hard time walking on her walker, now she started to get better walking, knee bending, raising her feet, speech improved a lot, fatigue has had an absurd improvement, it is easily controlling the bladder … and by Etravirine help to eliminate the sulfur and toxic iron of the body, it is beginning to gain muscle, because the liver is absorbing the supplements …. ah, the heart rate improved …

Rogier

Member

April 25, 2019 at 5:38 am

Hi Luciana,

Good to hear it’s helping her a lot! Did she notice any side effects?

Luciana Carbonari

Member

April 25, 2019 at 2:27 pm

Rogier, no side effects

Aaron Travers

Member

April 28, 2019 at 6:31 pm

Hi everyone,

@gunnhild sorry to trouble you, hope you are continuing to see improvements on Etravirine. You mentioned previously Etravirine gave others great walking improvements… can you elaborate further here or provide any more info / examples..thank you

Gunnhild

Member
May 4, 2019 at 7:57 am

Hi Aron 🙂 I don’t want to speak for others, but I suggest you ask the facebook group for that.Open for everyone with an interest for Etravirine.

Gian Piero

Member

April 29, 2019 at 7:50 am

Dear all, following Gunnhild Lystad’s suggestion, yesterday afternoon I have created a Facebook group dedicated to sharing info and experiences about Etravirine. The group is currently closed, not public. In order to be admitted new members have to respond to three questions during the subscription process. Those of you who are already on FB and would like to join the “Etravirine for FA” group can go to this link:

https://m.facebook.com/groups/2601479636546565?ref=share

Normally, if I didn’t make any mistake, before seeing any posts and participating you should be requested to subscribe. Please let me know if everything is ok.
Also, since this will be an international group, posts will be preferably in English, but as it happens in the BabelFAmily FB group, all languages can be used and translations from English are welcome.
This new FB group is open to those people who are interested about the use of Etravirine for FA and also to the patients or caregivers who want to share their experience with it.
All participants make a commitment not to share the discussion or information content without the consent of the person who made the comment or shared the information.
We welcome good discussions about all sides of a topic, but remember to be friendly and polite. Hurtful intents, bullying and scaremongering are not welcome and will automatically lead to be blocked and banned from the group.

Mary kelly

Member

May 1, 2019 at 7:06 am

Hi everyone
Can you tell me what blood tests need to be done?My 16 year old son very anxious to try this so far doctor hasn’t agreed
Has anyone got an address etc in Turkey so I can order .
Thank you
Mary

Chris

Member
May 4, 2019 at 3:33 pm

@simon16 I would say kidney and liver blood tests are the most important and maybe vitamin D and calcium but try to get all your insurance will cover 🙂

richard

Member

May 2, 2019 at 10:03 am

Well I have asked all my daughters doctors, While some are saying they will look into it, so far we are unable to get a script. Was wondering if anyone else in the USA have had any success in getting
a script? BTW not asking for your sources just want to know if anyone has been able to get it.
Thanks Rich

Gunnhild

Member
May 4, 2019 at 7:14 am

Hi Richard 🙂 At least two that I know of. Seems like you might ask the same question in the facebook group that Gian Piero is linking to.
Chris

Member
May 4, 2019 at 3:46 pm

@rich-ono Hi, yes. I got a prescription in Illinois. Someone in this thread got it in Louisiana I think. I went to maybe 4-5 neurologists and my primary and none would prescribe it. Finally got it from an “alternate medicine” doctor who worked for a big clinic and now has 2 private ones of his own. The key is not to go to doctors in popular or big hospitals/clinics. Try to go to a small clinic where a doctor can work with your daughter frequently.

Rogier

Member

May 2, 2019 at 12:44 pm

This is what I (really) don’t get. A lot of doctors, as mine, will not prescribe until there is proof of a phase 3 trial. I think however that this is a safe and thoroughly tested medicine that is used without hesitation for people with HIV. As FA is a progressive disease patients will not wait until scientific proof is there in 2-3 years. So the big question is imho is there more risk to an FA-er taking etravirine than to someone with HIV? If not, then why wait? Does anyone know the answer to this question

Chris

Member
May 4, 2019 at 4:06 pm

@rogierbdx agreed. A few years is too much for many FA-ers. I’ve come to realize just how useless many neurologists are. They do a test to basically see if you got worse or not and then wish you luck and a handshake. My first neurologist would keep interrupting me and said that everyone here just had a “placebo effect.” He googled side effects and it was basically laughable because I don’t mind diarrhea and headaches as long as I get better. When I was waiting for a follow-up appointment time I heard him walk into a room and start off by saying “Sorry I’m late everyone. I had a patient who tried to get a prescription for a drug I never heard of.” They all laughed and joked around. No compassion whatsoever.

Go for more opinions if you can and preferably private and/or general doctors. That’s how I got my prescription. I’ll update everyone here tomorrow. It will have been a month now and I’m not dead from this “dangerous medication” as described by many doctors.

richard

Member

May 4, 2019 at 6:03 pm

Thank You Chris and Gunnhild

@rich-ono Hi, yes. I got a prescription in Illinois. Someone in this thread got it in Louisiana I think. I went to maybe 4-5 neurologists and my primary and none would prescribe it. Finally got it from an “alternate medicine” doctor who worked for a big clinic and now has 2 private ones of his own. The key is not to go to doctors in popular or big hospitals/clinics. Try to go to a small clinic where a doctor can work with your daughter frequently.

Chris

Member

May 5, 2019 at 7:51 pm

An update from me.Quick info: I had FA about 7 years now and I walked/worked without support before I started etravirine. My condition is not severe as some and has been somewhat stable the past few years.

I just took my last pill for the day, concluding 4 weeks of taking etravirine 100mg twice daily. The effects were subtle, I think, until after 2 weeks in which my legs felt more stable/stronger. Mondays are usually my worst days but the past 2 weeks I just felt “ok.” No really bad days where my legs are really stiff or like jello. I thought it might be placebo until I concluded my 3rd week. I had just received an IV glutathione (antioxidant) treatment the day before and I really felt great. I was calmer while walking and again more stable, better posture and not awkward and jerky movements. My writing is still kind of slow but more fine-tuned and legible looking. My whole 4th week I felt the same with maybe small subtle improvements such as not needing a wide gait when walking and being able to keep my legs closer together. My movements standing up are more fluid and I feel my keyboard typing is quicker. I now also push myself to walk up the stairs without grabbing the railing, usually I can manage that but sometimes I need to grab it as a tip over a bit too sideways. I had another glutathione treatment yesterday but nothing significant of note. Maybe I’ll notice a big change tomorrow or day after. This past week has felt “weird” for me since I haven’t felt this good in a long time so I got used to feeling weak and bad. I keep hoping I don’t wake up with all these improvements being gone.

I don’t have improvements in speech but FA affects everyone differently so I’m being patient. I can accept leg improvements for now. My toes still also feel cold from time to time, contrary to the warmer feeling by others.

No side effects besides maybe my face and neck feeling “hot” at times but it’s not uncomfortable and it’s not a fever, I checked. I was paranoid in the beginning by checking my body temperature, pulse, etc. but I got into the rhythm of taking the pills and barely think about it. Going to get a blood test in the beginning of June.

I’ll try to update as often as I feel better in some way.

Jessie Beatty

Member

May 15, 2019 at 8:13 am

Since Etravine is already a safe prescribed med for HIV, will it take as long as a new med wold take to be approved for FA patients? Would Etravine for FA need to go through all the FDA steps for approval? I want to know how to get it for my daughter now. if I need to travel to another country to buy the med I will. Please let me know if anyone outside of the states is able to buy etravine without a prescription. Even if I need to have my daughter seen by a doc outside the states that will prescribe etravine for FA I will make it happen. I am so grateful to hear all of your experiences, it really helps!

Mary kelly

Member

June 3, 2019 at 10:38 am

Hi everyone..can anybody tell me if any brand you are using ..lactose free.
As my son is allergic to it
Please let me know asap…as I am planning on going to Turkey to purchase
Thank you
Mary

Amber

Member

June 13, 2019 at 5:15 pm

Can anyone give me the names/locations of doctors that are prescribing Etravirine for FA? Who do you see that is willing to give this a try?? PLEASE, any help is DEEPLY appreciated! Thank you!