Tagged: etravirine FA
January 22, 2019 at 12:20 pm #11302
January 22, 2019 at 12:28 pm #11303
Nice! Is it easily available? Have you any experience with it?
January 22, 2019 at 2:38 pm #11304
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!
January 22, 2019 at 3:37 pm #11310
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.
January 22, 2019 at 3:48 pm #11313
First day of the forum and already finding new information. Kudos, man.
January 22, 2019 at 3:59 pm #11315
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.
January 22, 2019 at 4:20 pm #11329
I agree 100% with you after reading this piece! Fingers crossed they can make some kind of headway and collab to make it happen.
January 22, 2019 at 4:05 pm #11316
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.
January 22, 2019 at 4:08 pm #11317
When you do, please share details!
January 22, 2019 at 4:15 pm #11327
I will let you know!
January 24, 2019 at 12:08 pm #11371
January 24, 2019 at 12:32 pm #11376
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.
January 24, 2019 at 12:54 pm #11379
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.
January 24, 2019 at 1:38 pm #11382
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 🙂
January 24, 2019 at 10:13 pm #11397
January 25, 2019 at 2:02 pm #11423
The full articles are in PDF format which can’t really be posted in the forum.
January 25, 2019 at 3:05 pm #11427
Hmm I don’t know what happened, sorry lol:
January 28, 2019 at 11:40 am #11476
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?
January 28, 2019 at 11:48 am #11477
Yes. Shandra, would you mind uploading Lynch’s response to that Google Drive and posting a link to it?
January 28, 2019 at 12:02 pm #11479
January 28, 2019 at 1:45 pm #11490
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!
January 28, 2019 at 12:36 pm #11482
I plan to start this week if my doctor agrees. Two people that I know already started last week!
January 28, 2019 at 1:14 pm #11486
Gunnhild, what dose are they using and is it more than once per day? Also, on what exact date did they begin?
January 28, 2019 at 1:45 pm #11489
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.
January 28, 2019 at 2:19 pm #11492
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🤞🏼
January 28, 2019 at 2:28 pm #11494
Man I have tears in my eyes. I am trying not to be too hopeful, but this seems incredible.
January 28, 2019 at 5:57 pm #11513
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 🙂
January 28, 2019 at 2:34 pm #11496Kathryn hansenParticipant
Is it available in the US? What ages have been tried?
January 28, 2019 at 2:57 pm #11499
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!🤞🏼
January 28, 2019 at 3:58 pm #11507
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+).
January 28, 2019 at 4:44 pm #11512
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
January 28, 2019 at 7:34 pm #11516
“…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?
January 28, 2019 at 9:52 pm #11526
Like everyone here, I am super excited about this drug’s potential!
I wanted to remind everyone that this forum is not in any way intended to be used as medical advice. Always consult with a physician before trying anything and we definitely do not encourage any medication that is not approved for FA treatment.
we in this forum are simply voicing excitement over the possibility of this drug’s potential to help people diagnosed with FA, pending more study.
January 29, 2019 at 1:20 pm #11548
Good point! Don’t just start takin a medicine just because someone else does and assume it is safe for you. Always to your own research and discuss it with your doctors.
Yes, I plan to measure what I can. Tomorrow I will film myself walking on the treadmill and film myself talking. Write something on a paper. Other suggestions?
I got the prescription today and I wont wait to order a peg-test thingy. My arms are not so affected, but maybe we can film and time my knitting speed instead? 🙂
January 29, 2019 at 1:25 pm #11550
This will sound like an odd question but I have a good idea. Do you have a wii fit @gunnhild ?
Your ideas sound good also!
January 29, 2019 at 1:49 pm #11553
Yes I do!! But I forgot about it. I will measure tomorrow! Brilliant idea 😀
January 29, 2019 at 3:22 pm #11561
January 29, 2019 at 3:00 pm #11558
And also I must mention that the price is 1/3 here compared to the US🙈
January 29, 2019 at 3:44 pm #11562
I can film my toes😆
January 29, 2019 at 3:49 pm #11565
Gosh that is creepy! Here’s why: I’ve just discovered that a group of men are sexually attracted to the feet of guys in wheelchairs. Isn’t that weird?! I have received friend requests from people like that on Facebook and it scares me because that is so strange to me.
January 29, 2019 at 8:45 pm #11570
January 30, 2019 at 8:54 am #11587
Gunnhild, please give more information about those who started the drug-age, when they were diagnosed, physical condition …..and the supervising physician what kind of research will be performed during the time of taking the medicine?
February 1, 2019 at 5:43 am #11632
They are both early onset in early twenties. The doctors prescribing the drug is primary physicians. I will keep taking blood tests to monitor kidney, liver and general blood status, but I already do that because of Imukin. It is also important to read the packaging information so you are aware of any changes that needs to be reported to the doctor. The patient needs to know what to look for.
January 31, 2019 at 4:33 pm #11627
@gunnhild Please do let us know if you feel better 🙂
I read the article this week and was lucky enough to find this forum while reading up on it.
My primary care doctor said she is not against the medication since it should have little to no side effects, it has already been tested and approved a long time ago, but she does want me to meet with my neurologist first. Unfortunately, healthcare doesn’t move fast in the USA so it might be a month or 2 before I get an appointment but I will (hopefully) get a prescription soon and inform you all how it goes with me as well.
January 31, 2019 at 5:15 pm #11628
February 1, 2019 at 5:37 am #11631
Hi guys!! I know you are excited to hear any news. I took one tablet yesterday. No side effects. Maybe som chills, but only maybe. Got up early this morning to eat breakfast early so I could take a new tablet early 😛 Must be taken with meals. Still no side effects so that is a relief. I was worried about nausea. Just hate that! So I’ve only taken two tablets so far. I think it is easier to get from sitting to standing, and I had to increase the speed on my treadmill. But everything I feel at this point is probably placebo. The improvements the two others have are things that I already have/can do. I also take Imukin and Thiamine injections + idebenone. If I get more energy I will have ADHD 😛 So of course I worry that I wont feel that much different, but I hope I will!! I am late onset also for the record. Diagnosed at 31. Now I’m 40.
February 1, 2019 at 7:26 am #11633
I also will try this Etravirine a.s.a.p. First i will discuss this with my Neuro doctor and ask if they can monitor me. (Blood, heart etc.). With a bit of luck I can get this medicine this month. I will let you know how if Etravirine works for me.
February 1, 2019 at 8:01 am #11634
This is very, very promising. Please keep us posted about your experiences. I will see my neurologist soon and ask him for a prescription and blood tests during use. Ivm very grateful for this forum and all your stories!
February 1, 2019 at 8:38 am #11643
Everybody must update us here:)
Make sure you know the possible side effects. Every new drug comes with its risks.
February 1, 2019 at 10:59 am #11646
G, how long have the other two people been talking the Etravirine? And do you know of any more improvements since you last reported?
February 1, 2019 at 12:32 pm #11647
About one week. Hearing improvement is on the list too now👌🏼☺️
February 1, 2019 at 8:40 pm #11649
@gunnhild Can you clarify the dose you’re taking? Is it 200mg twice a day with meals (so 400mg total) or 200 mg a day (100mg with one meal and 100mg with the other meal)?
I am just interested in keeping track of the people trying it while we wait for further research 🙂
February 2, 2019 at 5:25 am #11650
400 total. 200 mg twice a day with meals 🙂
February 2, 2019 at 5:35 am #11651
Gunnhild, are you blogging about this? I think a lot of people would love to read about it 🙂
February 2, 2019 at 5:59 am #11652
I dont know yet. When I have talked about etravirine in other groups som people get very upset, kind of. Especially parents of people with FA. I wonder if it puts too much pressure on some people.
With Imukin I waited for a couple of months before saying anything on the blog. Wanted to make sure It had an effect and too see how the side effects were.
I’m just not sure what to do yet 🙂
February 2, 2019 at 6:53 am #11653
I get it. As I think this could be a big step towards stopping FA I’m very excited and so are many people on this forum. We can’t ask you to post every little thing you experience but I’m already addicted to the good news you told us. How are you today, by example?
February 2, 2019 at 7:48 am #11654
As soon as I am getting Etravinine I will film myself every day, so everyone can get an impression. Monday I will ask for a prescription from my neurologist. So hopefully i can start soon. Here in The Netherlands it costs €6000 a year. But via tax refunds I can get €4000 back. So thats cheap here.
February 2, 2019 at 10:10 am #11656
February 2, 2019 at 10:33 am #11657
@matthew-lafleur. Don t know when i will start. Depands on my neurologist, if she will give me a prescription. Otherwhise I have to follow a different route. Monday I will ask her.
February 2, 2019 at 12:30 pm #11659
Keep us updated!
February 2, 2019 at 1:03 pm #11660
I have just taken tablet nr 5 so it had been 2,5 days since I started. I can not say that I feel any changes at this point. I also took my Imukin injection four hours ago. So far it looks like its not a problem to do both. That is a relief. I dont know when to expect to feel changes yet. The two others are early onset. Perhaps they feel quicker effects since the frataxin levels are lower to begin with. One of them actually sat steadily without support of the arms yesterday. Her mother said its five years since she could do that…
February 2, 2019 at 1:51 pm #11662
@lesley that’s good to hear, it will be valuable information. I’m from the netherlands too and hope to convince my neurologist soon. Without a prescription it is gonna be very hard to get etravirine though. Even if I pay for it myself.
@gunnhild thank you for keeping us posted. You mentioned going faster on the treadmill earlier. Is that still the case or am I just dying for good news 😉
February 3, 2019 at 11:09 am #11675
Update for you guys.
Until today I haven’t really felt any difference.I got a treadmill two weeks ago and I have walked 2-3 times every day. I have only lasted 2 minutes then the muscle in my legs would get stiff. On the clock after about two minutes. Like back in the days how the muscle felt after a really hard workout. So today all of a sudden I lasted for 3 minutes! And the legs felt much easier to move. Also I feel like I am automatically shifting weight from side to side and also have a slight counter-rotation in my upper body.These things I have been trying to make happen manually before, if you understand, since it has not been automatic. Also I am able to set down the heel of the foot first. I did 3 times 3 minutes throughout the day just to make sure 🙂
In theory I could be increased frataxin -> better iron “clean up” -> more ATP (energy) for the muscle.
Dare I hope for that? Is this the beginning of more improvements to come OR is it the almighty placebo playing his tricks?
February 3, 2019 at 11:36 am #11680
I am so hopeful for you. Thank you for updating us. You’re a very brave woman.
February 3, 2019 at 12:58 pm #11682
February 4, 2019 at 7:03 pm #11703
I wanted let you all know I went to the doctor today and he agreed to let me try Etravirine, 200 mg twice a day. Went to fill it they didn’t have it in stock so I will take my first dose tomorrow evening. My insurance did pay for it but it is off label so I have to pay $460 but the insurance is paying $1200. I will look into programs to help pay the deductible. Iam beyond excited!!!
February 4, 2019 at 7:53 pm #11704
February 4, 2019 at 8:19 pm #11705
Chris I live in New Orleans Louisiana and have Humana Medicare
February 5, 2019 at 10:41 am #11725
Hello, I need some help,
can anyone explain to me in simple terms Doctor Lynch’s statement about Etravirin, because I use an interpreter I can not understand the text well.
February 5, 2019 at 10:52 am #11727
Basically, he said the experiment should be replicated with FA heart cells and FA nerve cells.
February 6, 2019 at 1:09 pm #11754
Hi 🙂 I thought I would get notification on all post in this tread so I though there were nothing new here… until I just checked. Oh, well.. not so experienced with forums I guess 😛
Michelle, very exciting to hear if you have any side effects at this point? I only have some chills in the evenings.
Update on the treadmill walking. Yesterday I did 5 minutes! Two times! Very exciting. Seems like the biggest changes have come the day after I take both Etravirine and Imukin. Too early to tell if there is something to it. I write a Etravirine diary so we’ll see after some weeks if there is a pattern.
I also feel like speaking is going easier, and it is easier to walk the stairs. However how “I feel” is not very significant so it could be placebo of course. Thats it from me. Anyone else started?
February 6, 2019 at 4:26 pm #11755
Hey Guys! Here’s an update. I started Etravirin yesterday evening, I’ve had two doses. So far I’ve had no side effects. Well, I hope it’s not placebo effect. I feel like I have more trunk control and less tremors. Last night when I went to bed my body felt more relaxed. What I find interesting is I have neuropathy and I get shooting pains sometimes and I take potassium and it gets rid of the pain. This past week the pain has been more often. Yesterday evening I was having pain, I took my first dose of Etravirin and witin an hour the pain was gone. Coincidence, placebo I don’t know but interesting. That’s all I have right now but will update more in a couple of days.
February 7, 2019 at 2:42 am #11757
Thank you so much @gunnhild and @michsmith05 for sharing these stories. I was hoping to see any medication that could stop or slow down FA but this seems even better. I am, and I guess a lot of people are, trying to get a prescription. Meanwhile I am enjoying your stories! Thank you so much for that (Y)
February 8, 2019 at 7:51 am #11764
Hello everyone, I look forward to every post in the topic and I’m exploring how we can get the medicine because it’s not sold in our country.
I’m very hopeful and I hope we can get it for our 16 year-old son.
Gunnhild, please keep us informed of what happens to the other two who take Etravirin before you.
February 9, 2019 at 12:18 pm #11779
I ordered 2 packages of Etravirine it will take 12 days to come to Lebanon i hope for the best.
@dobiiv2 it’s not sold in Lebanon also but my mom and my aunt ordered it from a pharmacy in Turkey and they’ll send it
February 9, 2019 at 2:32 pm #11784
That’s exciting news Ous!!
I love hearing everyone’s updates. I’m hoping to hear from the researchers soon about what their plans are for further scientific investigation. It takes a long time (months) to get a scientific paper published. So while we only heard about the results in mid January (when it was published), the scientists responsible have been aware for quite awhile now and are therefore probably well-underway in further research. I’ll keep in touch if I hear anything!
February 10, 2019 at 2:07 am #11787
February 9, 2019 at 11:50 pm #11785
Ous, what’s the price in Turkey?
February 10, 2019 at 2:05 am #11786
February 10, 2019 at 3:48 pm #11790
My neurologist did not agree to prescribe it for me since he doesn’t have any experience/knowledge with HIV medication, so I will once again ask my primary care physician since she was open to the idea of me trying the medication and knew what the medicine was used for as soon as I asked.
Any updates from anyone else who has been trying it? Do you feel better, same, or worse? Anyone else have been able to get a prescription from their doctors? @shandrajamie do let us know what the researchers say 🙂 I’m hoping clinical trials are coming our way soon since this medication is already approved and we know new medication takes forever :/
Always look forward to this thread.
February 11, 2019 at 12:26 pm #11789VericaParticipant
Pozdrav svima….Ja imam dvoje dece koja imaju FA. Iz Srbije smo I planiramo da krenemo sa Etravirinom kao I jos nekoliko obolelih iz ove zemlje.Saznali smo da je u Rusiji Etravirin oko 100 eura kutija 60 caps 200mg…Prosledicu vam sada I link
Greetings to everyone …. I have two kids who have FA. From Serbia we are planning to start with Etravirina as well as a few other people from this country. We found that in Russia Etravirin about 100 euros a box 60 caps 200mg … I will give you the link
February 12, 2019 at 10:30 am #11825
Here is an update from me so you know that I am good and alive 🙂
It is now 1,5 weeks since I started Etravirine. As I’ve told earlier my record for treadmill walking was 2 minutes before Etravirine. Yesterday I walked for 9 minutes! Cool increase right? 🙂 I bought a pulse watch one week ago and from measuring my heart rate I can see that the point from where I’m entering the red zone (exhaustion) is pushed up from about 3 minutes to about 6 minutes.
I feel stronger and more in control of my body the last few days. Standing up feels easy today. We’ll see if this is the start of more effects to come or if its just a good day.
Side effects: As before I can get chills in the evening. Not unpleasant. On day 6 I got this pressure over my ears a couple of hours after the pill. I’ve had it a few times. It is not unpleasant either.
February 12, 2019 at 11:09 am #11826
This is great Gunnhild,
You have news from the other two, they are already in the 3rd week, I look forward to their resolutions ….
February 12, 2019 at 12:01 pm #11827
February 12, 2019 at 12:10 pm #11828
I asked the two others to sign up and update you here 🙂 They even have better news than me 🙂
February 16, 2019 at 9:37 am #11887
February 16, 2019 at 10:11 am #11891
Ilva, thank you for the update. I recommend folks read her blog entry. A few things that interested me…
1) Your personal experience sounds very encouraging. I’m especially interested in how speech and visual control is affected.
2) You mention something like training the body should accompany the drug’s use. That makes sense.
3) You’re diabetic and use insulin, but haven’t for 4 days because your blood sugar measures close to normal. Has this ever happened before etravirine? I ask because this might be the only hard data you might collect from your experience, and I know diet affects blood sugar measurements. Has your diet changed?
February 23, 2019 at 12:55 pm #12061Ilva MadsenParticipant
Hi! I`m so sorry it took me so long to get online here..but the feedback I’ve gotten on the blog post are mostly positive <3
It was actually my mom that pointed out that my speech was better. I talk a lot so I didn’t notice before she said it. My words are clearer and I have more power to speak louder. Its less of a struggle to say things clearer and louder. I didn’t really struggle with my vision before but Ive noticed something happening with the muscles behind the eyes and also Ive had days where I can physically feel my occipital lobe (part of brain that is in charge of vision and color blindness).
The part where I said I could feel my brain chancing is a mixture of a headache and dizziness. I compared it to a headache not because its painful, but because I can locate it. And I sometimes get dizzy because of it.
When it comes to my diabetes, not using insulin was an impulsive try. My blood sugar has always been controllable and stable with insulin. But my doctor told me to watch my blood sugar more often when I started using Etravirine so I just wanted to see what happened if I didn’t take my daily insulin. I use two types of insulin, Tresiba that I take daily and Novorapid that I take trough out the day if needed. Now I only take Novorapid if needed. I have days where I will take Tresiba if I know Im gonna be busy that day and can’t check my blood sugar often.
Its been 12 days now and I notice that I have to take less insulin than before.
And my diet hasn’t changed. I try to eat as healthy as I can but I have a sweet tooth so I eat a little bit of chocolate (then I take insulin of course).
February 18, 2019 at 10:18 am #11912
February 19, 2019 at 5:03 pm #11956
UPDATE: As of today it marks two weeks that I’ve been on Etravirin. The few improvements I had the first few days are still there. At day 5,6,7,8 and 9 I felt horrible. My symptoms seem to have gotten worse, my muscles and my joints in my fingers hurt. By day 10 I felt great!!! This is what has gotten better. easier to get out of a chair, a toilet and the bed. easier to get out the tub or being on the ground to standing. I know this sounds strange but if I drop something and my back hurts to bend over I am able to grab it with my toes and pick it up( I have not been able to do that in years). Driving my car has become easier also( I feel like I’m not as tight, more relaxed). My walking is faster on some days. I find I’m moving my body like a normal person(not all the time it comes and go’s) I defiantly feel it working!!!! I still don’t know if any of this is placebo or if will last but I’m loving it for now.
February 20, 2019 at 3:05 am #11958
I’m so excited for you Michelle! You were really brave to keep taking the drug during those horrible days. Sounds like it really paid off.
I’m on day 19 now.I work on my walking technique on the mill, because I have more control over my movement and can “connect” better with my ankles to a certain degree. When I drop things on the floor I squat down and I am able to get back up again. With support of my hands. I dont think I have done that for a couple of years. I also walk faster 🙂
Ilva is a busy woman, but she will probably join the forum eventually Jonathan.
I know one more person who started taking Etravirine. Anyone else?
February 20, 2019 at 3:12 am #11959
I have a question do you all guys do physio therapy while taking etravirine? and what other medications do u take?
February 20, 2019 at 4:04 am #11960
I don’t go and see a physiotherapi no, but I do exercises at home.
Here is my drug and supplement list:
200 mg etravirine x 2
450 mg x 2 idebenone
1100 mg Omega 3
320 mg Medox (antocyans, antioxidants)
1,25 mg Emconcore
Three times per week:
250 mcg Imukin subcutaneously
Two times per week:
100 mg Thiamine intramuscular
February 20, 2019 at 8:30 am #11965
Hi Girls and Guys,
we have created a whatsapp chat group as a secondary tool to share any news or experience on this topic.
If you want to join it please contact me first on Messenger through Facebook.
February 20, 2019 at 10:59 am #11971
That’s cool! Can anyone joining the WhatsApp group still post any updates here though? I like the forum for many reasons–including that the information people share is available for anyone to see 🙂
February 21, 2019 at 4:53 am #11988
this blog and the WhatsApp chat group are not in competition. They are complementary. No doubt any relevant update regarding Etravirine for FA patients will be shared here as well.
February 20, 2019 at 11:13 am #11973
Exactly my thought Shandra. This info is for everybody. I will keep updating here and I hope the rest will too☺️
February 20, 2019 at 11:37 am #11978
I second that. Let’s keep this publicly available! Even though it’s an admiring idea. :-;
February 20, 2019 at 6:56 pm #11982
This seems like great news 🙂 I am still trying to get a prescription :/
I know symptoms and severity vary, but has anyone who is taking etravirine noticed speech improvements? Does it feel more fluid and easier to talk? Did family, friends, etc. make any comments? My speech is slurred as I’m sure quite a few with FA most likely experience.
February 21, 2019 at 5:31 am #11989
Ilva’s mother has noticed a big improvement in dysarthria and energy level.
February 22, 2019 at 3:46 pm #12039
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 ?
February 23, 2019 at 8:52 am #12050
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.
February 23, 2019 at 10:26 am #12057
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!
February 25, 2019 at 8:39 pm #12112
Thank you for the reply to my question regarding possible interactions with Gene Therapy.
February 23, 2019 at 4:02 am #12046
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.
February 23, 2019 at 8:47 am #12049
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.
February 23, 2019 at 5:10 am #12047
February 23, 2019 at 8:38 am #12048
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.
February 23, 2019 at 8:58 am #12051
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!
- This reply was modified 1 year, 6 months ago by Jonathan.
February 23, 2019 at 9:09 am #12053
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.
February 23, 2019 at 9:24 am #12054
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)?
February 23, 2019 at 11:57 am #12058
February 23, 2019 at 10:05 am #12056
Do NOT get injured trying to measure these abilities! 😛
February 23, 2019 at 12:46 pm #12062Ilva MadsenParticipant
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) 🙂
February 24, 2019 at 6:15 am #12076
February 24, 2019 at 11:36 am #12078
The fact that you dont need insulin now makes it so much interesting! Its hard for placebo to be the reason for that 🙂
February 26, 2019 at 1:06 pm #12117
Ous, what happens with you? Start Etravirin?
February 26, 2019 at 3:54 pm #12131
February 26, 2019 at 3:56 pm #12122
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 !! !!
February 27, 2019 at 10:04 am #12145
That is exciting news Luciana! 🙂 What is the price for one month treatment in Brazil? Is it her neurologist that prescribed it?
February 28, 2019 at 10:21 am #12173
February 28, 2019 at 12:14 pm #12174
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.
February 28, 2019 at 12:15 pm #12175
In Turkey cost for Intelence is 300 euro 60 tablets. We wait tomorrow the drug and and start.
February 28, 2019 at 12:17 pm #12176
With or without a prescription?
February 28, 2019 at 12:19 pm #12177
RRoger, in Turkey and Russia, but you need ss`omeone to bye and send you.
March 3, 2019 at 8:14 am #12218
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?
- This reply was modified 1 year, 6 months ago by Gunnhild.
March 3, 2019 at 9:18 pm #12230
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!
March 6, 2019 at 9:50 am #12286
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 🙂
March 6, 2019 at 12:21 pm #12299
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.
March 8, 2019 at 9:55 am #12337
Hi, gays, why nobody write? MICHELLE, Ous?
March 8, 2019 at 11:23 am #12348
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.
March 8, 2019 at 5:39 pm #12352VincentParticipant
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!!
March 8, 2019 at 6:56 pm #12357
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.
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.
March 10, 2019 at 9:57 am #12358
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.
March 10, 2019 at 10:34 am #12359
March 12, 2019 at 5:52 am #12391LynnParticipant
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 🙂
March 14, 2019 at 3:14 pm #12457
March 16, 2019 at 8:17 am #12470
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.
March 18, 2019 at 12:41 pm #12505
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 – 100mg
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.
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.
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).
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.
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.
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.
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 – 100mg
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.
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.
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).
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 .
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.
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.
Permaneço quentinha, mas estou mal devido a tpm e protocolo, me sinto cansada e sem vontade de fazer nada.
March 18, 2019 at 1:13 pm #12512
Can someone interpret the last post in English?
March 19, 2019 at 10:34 am #12532
Wait…I did already.
March 20, 2019 at 3:50 pm #12565Ersley JohnsonParticipant
This Etravirine sounds very positive. I look forward to hearing more positive results.
March 21, 2019 at 3:00 pm #12581
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.”
March 21, 2019 at 5:20 pm #12586
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.
March 21, 2019 at 8:29 pm #12587
March 22, 2019 at 7:48 am #12590LynnParticipant
My 22 year old son will start etravirine today 😀.
March 24, 2019 at 1:42 am #12619
Go Lynn go!!!
March 25, 2019 at 10:50 am #12640
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 🙂
March 26, 2019 at 9:27 pm #12683AmberParticipant
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.
March 26, 2019 at 9:31 pm #12684mercedesParticipant
March 26, 2019 at 9:35 pm #12688
Thank you for sharing this!
@shandrajamie can you translate it for us dummies?
March 27, 2019 at 9:05 am #12689
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!
March 27, 2019 at 9:05 am #12691
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.
March 27, 2019 at 9:25 am #12695
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.
March 27, 2019 at 9:19 am #12694
Section IV describes factors for dose (e.g, age, weight, health, etc.).
March 27, 2019 at 9:28 am #12693
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.”
March 27, 2019 at 12:53 pm #12713JackParticipant
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 daily
and 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 daily
The 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).
April 2, 2019 at 11:18 am #12799
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
April 8, 2019 at 4:43 pm #12897Giulio CarcanoParticipant
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.
April 9, 2019 at 7:27 am #12900
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.
April 10, 2019 at 11:01 am #12923
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? 🙂
April 11, 2019 at 6:06 am #12947
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 🙂
April 13, 2019 at 11:44 am #12961
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.
April 14, 2019 at 11:53 am #12960
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 🇵🇹
April 17, 2019 at 12:12 pm #13030SharonParticipant
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!
April 24, 2019 at 2:15 pm #13136
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 …
April 25, 2019 at 5:38 am #13143
Good to hear it’s helping her a lot! Did she notice any side effects?
April 25, 2019 at 2:27 pm #13149
Rogier, no side effects
April 28, 2019 at 6:31 pm #13160Aaron TraversParticipant
@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
May 4, 2019 at 7:57 am #13248
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.
April 29, 2019 at 7:50 am #13144
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:
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.
May 1, 2019 at 7:06 am #13212
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 .
May 4, 2019 at 3:33 pm #13252
May 2, 2019 at 10:03 am #13228
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.
May 4, 2019 at 7:14 am #13249
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.
May 4, 2019 at 3:46 pm #13253
@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.
May 2, 2019 at 12:44 pm #13235
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
May 4, 2019 at 4:06 pm #13255
@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.
May 4, 2019 at 6:03 pm #13256
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.
- This reply was modified 1 year, 4 months ago by richard.
May 5, 2019 at 7:51 pm #13260
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.
May 15, 2019 at 8:13 am #13353Jessie BeattyParticipant
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!
June 3, 2019 at 10:38 am #13529
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
June 13, 2019 at 5:15 pm #13748AmberParticipant
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!
July 4, 2019 at 8:25 am #14041
July 16, 2019 at 2:07 pm #14167
Hi everyone..any more updates..I have appointment on 26 July with my sons doctor..really hoping to persuade them to prescribe
July 18, 2019 at 10:20 am #14208
July 18, 2019 at 10:21 am #14209
September 21, 2019 at 9:52 am #14869
Hi can anyone give an update on how progressing with this drug
January 27, 2020 at 7:12 am #15710Lichi DanielParticipant
Hi all, some news?
January 28, 2020 at 2:44 pm #15720
January 28, 2020 at 2:44 pm #15719
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