- This topic has 203 replies, 33 voices, and was last updated 3 years, 1 month ago by
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https://www.ncbi.nlm.nih.gov/pubmed/30624801
The drug’s 10+ years old. Designed originally to treat HIV. Safe. Potential therapeutic.
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I don’t have any experience with the drug. This research is just in vitro, and sure, FA cells were used, but the cells weren’t from heart or nerve tissue. I’d like to see the experiment repeated with those cell types.
If the results remain encouraging, then skip mouse models (which really aren’t good FA models anyway), and move onto patient trials. In those trials, an appropriate dose can be determined.
Until then, dosage is a mystery. And etravirine isn’t without its own risks.
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Yeah, even Dr. David Lynch wrote an opinion about it the day after the research was published. I hope he and FARA can expedite funding to arrange further research.
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LOL, yeah, so old.
I’m glad FAN pub’d it. Patients should see it. Although, and this is me being honest but critical, the author should write in a manner that his audience can easily understand. Break it down (even the methods and materials) into plain language because most patients and parents (etc.) aren’t science students.
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Hmm I don’t know what happened, sorry lol:
https://drive.google.com/file/d/1Q4zZ8NIcMFszr310LC250ajPNJ1t9cOY/view?usp=sharing
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I think I got it. It is 2019, right? I should be able to post Dr. Lynch’s article: I hope this works.
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The drug is called Intelence in europe. The recommended dosage is 200 mg two times per day with meals.
They started last wednesday and friday.-
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Sorry to bug you, @gunnhild is the most popular person in the forum now. I researched and saw that the recommended dosage for etravine for HIV patients is 200 mg per day. Do your friends really take double the prescribed dosage daily?
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Yes they both did! We almost dont dare believing it! Energy, improved speech, toe wiggeling, normal temperature and colour in feet and hands, stronger, improved balance… I’m very excited to try for myself. I hope I dont have any side effects that stop me from taking it and fingers crossed for some effects🤞🏼
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Hi! I was wondering if the people taking it are documenting the effects they feel? Like photos/videos.
If the drug is doing good it would definitely help move things along in terms of having official human trials if the people taking it in Europe shared the proof of their experiences with researchers here. Also I’d love to follow their experiences. I am a science student but also a hopeful FAer 🙂
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Those results are awesome. And now for two uncomfortable problems…
1. In the United States, 60 tablets of etravirine (a single month’s supply) is roughly $1500.
2. Even if I can convince my doctor to prescribe it, I highly doubt insurance will help pay for it (unless I’m diagnosed HIV+).
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“…I was wondering if the people taking it are documenting the effects they feel? Like photos/videos.”
I want to suggest collecting data via a 9 Hole Peg Test (9HPT). It’s simple. Basically, get a baseline measurement by timing it with no drug. Record the time. Then after taking drug for a week, re-test. Record the time. Repeat. Maybe do 10-12 tests. Do NOT practice between tests.
Gunnhild, would you?
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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.
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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? 🙂-
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!
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Sorry if this is a strange suggestion, but I am so interested in the possibility of wiggling your toes on command. I haven’t been able to do that in years. If it’s not too weird, can you report your progress doing [email protected]?
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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.
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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?
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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.
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@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.
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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.
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@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 🙂
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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 🙂
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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.
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@lesley this will be so valuable. Thank you for doing this. When will you start?
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@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.
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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…
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@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 😉 -
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?
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@gunnhild thank you so much for your update! I hope you are feeling better and fitter! Meanwhile I hope I can get a description 🤞🏼
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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!!!
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Just wondering @michsmith05 if I may ask, what insurance or area do you live in? Hopefully my insurance will pay some of the cost if I can get a prescription this Thursday.
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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? -
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.
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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)
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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. -
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-
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!
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@shandrajamie i’ll make sure to notify you and everybody else with everything new
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it’s for 240$ a pack of 100mg 120 pills @dobiiv2
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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.
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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
https://www.pharmindex.ru/intelens.htmlGreetings 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
https://www.pharmindex.ru/intelens.html -
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. -
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Oh my! @gunnhild this is making me so incredibly happy! Thank you so much for sharing this with us.
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3 weeks with Etravirine
3 weeks with Etravirine -
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?Thank you.
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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).
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@gunnhild Thanks for the info 🙂
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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.
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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?
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I have a question do you all guys do physio therapy while taking etravirine? and what other medications do u take?
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I don’t go and see a physiotherapi no, but I do exercises at home.
Here is my drug and supplement list:
Daily:
200 mg etravirine x 2
450 mg x 2 idebenone
1100 mg Omega 3
320 mg Medox (antocyans, antioxidants)
1 Multivitamine
1,25 mg EmconcoreThree times per week:
250 mcg Imukin subcutaneouslyTwo times per week:
100 mg Thiamine intramuscular
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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.
https://www.facebook.com/gianpiero.sommarugaHugs,
GP 😉
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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 🙂
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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.
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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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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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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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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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@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. -
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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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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 -
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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 🙂 -
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@dobiiv2 how is your son doing? Did he notice some progression by now?
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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
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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. -
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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.”
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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.
8 weeks with Etravirine -
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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 🙂
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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!
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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.
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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.
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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).
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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. -
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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? 🙂
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Hi @gunnhild,
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 🙂
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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 🇵🇹 -
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 🇵🇹
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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 …
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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 -
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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. -
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-
@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 🙂
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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-
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@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.
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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
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@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.
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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. -
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.
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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!
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Dear all, I invite you to join the Telegram chat group on Etravirine, with more than 110 participants:
https://t.me/joinchat/J682xhFAMTiMpCo3Of5PXQAlso, if you are already on FB you can join the Etravirine for FA group:
https://www.facebook.com/groups/2601479636546565/See you soon!
GP 😉
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Dear all, I invite you to join the Telegram chat group on Etravirine, with more than 110 participants:
https://t.me/joinchat/J682xhFAMTiMpCo3Of5PXQAlso, if you are already on FB you can join the Etravirine for FA group:
https://www.facebook.com/groups/2601479636546565/See you soon!
GP 😉
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Also Facebook
https://www.facebook.com/groups/2601479636546565/ -
Hi Lichi
Download Telegram App to participate in ongoing chats …I have just joined recently myself
https://t.me/joinchat/J682xhFAMTiMpCo3Of5PXQ
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