Forum Replies Created

  • rogier

    Member
    May 2, 2019 at 12:44 pm in reply to: Etravirine…

    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

  • rogier

    Member
    April 25, 2019 at 5:38 am in reply to: Etravirine…

    Hi Luciana,

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

  • rogier

    Member
    April 11, 2019 at 6:06 am in reply to: Etravirine…

    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 🙂

  • rogier

    Member
    April 9, 2019 at 7:27 am in reply to: Etravirine…

    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.

  • rogier

    Member
    March 14, 2019 at 3:14 pm in reply to: Etravirine…

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

  • rogier

    Member
    March 4, 2019 at 1:04 pm in reply to: Coughing Symptom

    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 🙂

  • rogier

    Member
    February 28, 2019 at 12:17 pm in reply to: Etravirine…

    With or without a prescription?

  • rogier

    Member
    February 28, 2019 at 12:14 pm in reply to: Etravirine…

    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.

  • rogier

    Member
    February 20, 2019 at 11:37 am in reply to: Etravirine…

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

  • rogier

    Member
    February 12, 2019 at 12:01 pm in reply to: Etravirine…

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

  • rogier

    Member
    February 7, 2019 at 2:42 am in reply to: Etravirine…

    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)

  • rogier

    Member
    February 2, 2019 at 1:51 pm in reply to: Etravirine…

    @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 😉

  • rogier

    Member
    February 2, 2019 at 6:53 am in reply to: Etravirine…

    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?

  • rogier

    Member
    February 2, 2019 at 5:35 am in reply to: Etravirine…

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

  • rogier

    Member
    February 1, 2019 at 8:01 am in reply to: Etravirine…

    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!

  • rogier

    Member
    March 1, 2019 at 9:40 am in reply to: Etravirine…

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