Rogier

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…[Read more]

Hi Luciana,

Good to hear it’s helping her a lot! Did she notice any side effects?

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…[Read more]

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.

@dobiiv2 how is your son doing? Did he notice some progression by now?

It is exactly what I experienced a lot! Now that i excercise a lot and regularly fill my lungs and then hold my breath it’s almost gone 🙂

No, it’s twice 200 mg, so that’s what you need

With or without a prescription?

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.…[Read more]

I second that. Let’s keep this publicly available! Even though it’s an admiring idea. :-;

Oh my! @gunnhild this is making me so incredibly happy! Thank you so much for sharing this with us.

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)

@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…[Read more]

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?

Gunnhild, are you blogging about this? I think a lot of people would love to read about it 🙂

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!