[Gunnhild]

Hi guys 🙂 I’ve had celiac disease all my life and i’m on a strict gluten free diet. It’s interesting to read your experiences with gluten free diet. I myself have nothing to compare with.

I don’t understand the advice the nutritionist gave you, Jassim. Gluten free alternatives are full of sugar. Really rubish for diabetes. I would rather say go for low carb diet 🙂

[Gunnhild]

This could be a quote Jonathan!

You need to visit hell more often and see yourself dominate it.

I think it’s the coolest thing I’ve seen in a long time.

To be able to master the darkness you must go all the way down into the hell to experience it… then rise again and you know more what to do to avoid hell. Goes with most aspects of life I think🙌🏼🙌🏼🙌🏼 Thank you guru Jonathan😁

[Gunnhild]

Hi 🙂

We all see life in a different way, but is there someone who really don’t prefer to have hope in something (for as long as it lasts) rater than no hope at all? I’m just curious because the years that I had no hope felt like hell to me.

[Gunnhild]

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? 🙂

[Gunnhild]

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 🙂

[Gunnhild]

Oh, am I the first commenter here! I hope there will be a good tqlk about this important subejct.I was diagnosed at 31 so I had already started my career a while back. When the symptoms really started to trouble me I had to adapt the work around me. Let go of some tasks and get good at new tasks. Ten years after the diagnosis I still work full time but my work day looks much different now. My education is physiotherapist but today I work mainly on a computer.

There is so much we can do even if the body is not cooperating. I don’t really know what to say next 😛 It’s such a big topic and I can go on forever about it. I’m curious about others experiences.

[Gunnhild]

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 🙂

[Gunnhild]

I don’t have that on a daily basis, but when I get a cold I often get a dry cough that lasts long after the cold is gone.

[Gunnhild]

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?

[Gunnhild]

The fact that you dont need insulin now makes it so much interesting! Its hard for placebo to be the reason for that 🙂

[Gunnhild]

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.

[Gunnhild]

Exactly my thought Shandra. This info is for everybody. I will keep updating here and I hope the rest will too☺️

[Gunnhild]

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?

[Gunnhild]

I asked the two others to sign up and update you here 🙂 They even have better news than me 🙂

[Gunnhild]

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.

[Gunnhild]

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.

[Gunnhild]

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.

[Gunnhild]

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 🙂

[Gunnhild]

That is exciting news Luciana! 🙂 What is the price for one month treatment in Brazil? Is it her neurologist that prescribed it?

[Gunnhild]

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 😛

[Gunnhild]

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.

[Gunnhild]

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.

[Gunnhild]

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.

[Gunnhild]

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 Emconcore

Three times per week:
250 mcg Imukin subcutaneously

Two times per week:
100 mg Thiamine intramuscular