Friedreich's Ataxia News Forums
  • Home
  • About Our Forums
  • Forums
  • Groups
  • Members
  • Activity
Log In or Register to Join The Conversation!

Rogier

Home Members Rogier
show less show more
Profile picture of Rogier

@rogierbdx

  • Activity
  • Profile
  • Friends 2
  • Groups 0
  • Forums
  • Personal
  • Mentions
  • Favorites
  • Friends
  • Groups
  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 10 months ago

    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]

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 10 months ago

    Hi Luciana,

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

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 10 months ago

    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]

  • Profile picture of Catherine Vasquez Ortiz

    Catherine Vasquez Ortiz and Profile picture of RogierRogier are now friends 1 year, 10 months ago

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 10 months ago

    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.

  • Profile picture of Frankie Perazzola

    Frankie Perazzola and Profile picture of RogierRogier are now friends 1 year, 11 months ago

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 11 months ago

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

  • Profile picture of Rogier

    Rogier replied to the topic Coughing Symptom in the forum Living with FA 1 year, 12 months ago

    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 🙂

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

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

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    With or without a prescription?

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    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]

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

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

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

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

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    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)

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    @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]

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    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?

  • Profile picture of Rogier

    Rogier changed their profile picture 2 years ago

  • Profile picture of Rogier

    Rogier's profile was updated 2 years ago

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

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

  • Profile picture of Rogier

    Rogier replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 2 years ago

    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!

  • Load More
Profile Photo Marilou Profile Photo Sheryl

Search Forums

Who’s Online

There are no users currently online

Log In

 Log in with Facebook
or

Lost your password?
Register
Forgotten Password
Cancel

Newest Topics

  • Rare Disease Day – BioNews by Christina Cordaro
  • Usual breakfast by Frankie Perazzola
  • Adaptations around the house by Frankie Perazzola
  • Rare Disease Day – Social Media Initiative by Christina Cordaro
  • Starting to open? by Frankie Perazzola

Recent Replies

  • Bedsores
  • Romantic relationships
  • Self driving or having someone else drive
  • Pharma News – Novartis
  • Romantic relationships

Members

Newest | Active | Popular
  • Profile picture of Christina D
    Christina D
    Active 1 day, 8 hours ago
  • Profile picture of Frankie Perazzola
    Frankie Perazzola
    Active 1 day, 9 hours ago
  • Profile picture of Kevin Schaefer
    Kevin Schaefer
    Active 2 days, 9 hours ago
  • Profile picture of Christina Cordaro
    Christina Cordaro
    Active 2 days, 16 hours ago
  • Profile picture of Anna
    Anna
    Active 3 days, 14 hours ago

Forums

  • Coronavirus (COVID-19) and FA
  • Living with FA
  • Relationships & FA
  • Assistive Device Usage
  • FA Research, Scientific News, & Clinical Trials
  • Parents & Caregivers of Those with FA
  • About Our Forum
  • Nutrition, Supplements, and Exercise
  • Additional Resources
  • Most popular topics
  • Topics with no replies

Friedreich’s Ataxia News

BioNews Services, LLC
3 W Garden St
Suite 700
Pensacola, FL 32502
Email: [email protected]
Phone: +1-800-936-1363
  • Terms of Service
  • Privacy Policy

Recent Posts

  • Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion
  • The Battle Between Taking Care of Myself and Letting FA Ruin My Life
  • Neuro Key ‘Open Door’ Booklet Gives Voice to FA Patient, Caregiver Stories

Disclaimer

Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Copyright © 2017-2021 All rights reserved.

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
 Log in with Facebook
or

Log in with your credentials

or     Create an account

Lost your password?

Forgot your details?

I remember my details
 Log in with Facebook
or

Create Account