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Etravirine…
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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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Yes I do!! But I forgot about it. I will measure tomorrow! Brilliant idea 😀
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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 that@gunnhild?
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And also I must mention that the price is 1/3 here compared to the US🙈
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I can film my toes😆
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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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HAHAHAHAHAHAHA gross..
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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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I am really glad you found us @cgumie2. We’re all waiting to hear from @gunnhild with bated breath (at least I am)!
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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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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.
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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!
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Everybody must update us here:)
Make sure you know the possible side effects. Every new drug comes with its risks.
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G, how long have the other two people been talking the Etravirine? And do you know of any more improvements since you last reported?
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About one week. Hearing improvement is on the list too now👌🏼☺️
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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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400 total. 200 mg twice a day with meals 🙂
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Gunnhild, are you blogging about this? I think a lot of people would love to read about it 🙂
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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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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?
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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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Keep us updated!
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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 😉
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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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I am so hopeful for you. Thank you for updating us. You’re a very brave woman.
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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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Chris I live in New Orleans Louisiana and have Humana Medicare
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