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Etravirine…
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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. -
Basically, he said the experiment should be replicated with FA heart cells and FA nerve cells.
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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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Ous, what’s the price in Turkey?
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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. -
This is great Gunnhild,
You have news from the other two, they are already in the 3rd week, I look forward to their resolutions …. -
Oh my! @gunnhild this is making me so incredibly happy! Thank you so much for sharing this with us.
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I asked the two others to sign up and update you here 🙂 They even have better news than me 🙂
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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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Hi Shandra,
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.
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Exactly my thought Shandra. This info is for everybody. I will keep updating here and I hope the rest will too☺️
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I second that. Let’s keep this publicly available! Even though it’s an admiring idea. :-;
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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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