Chris

Hope something good comes of this 🙂

Never heard of this either. Seems interesting. Does it help you or someone you know with FA?

I also tried a few sessions because a family friend suggested it. No effect.

I heard of Kratom but never tried it. Was considering it. It’s banned in some US states, I think, but I can buy it in mine.Supposed to give a good energy boost.

An update from me.Quick info: I had FA about 7 years now and I walked/worked without support before I started etravirine. My condition is not severe as some and has been somewhat stable the past few years.

I just took my last pill for the day, concluding 4 weeks of taking etravirine 100mg twice daily. The effects were subtle, I think, until…[Read more]

@rogierbdx agreed. A few years is too much for many FA-ers. I’ve come to realize just how useless many neurologists are. They do a test to basically see if you got worse or not and then wish you luck and a handshake. My first neurologist would keep interrupting me and said that everyone here just had a “placebo effect.” He googled side effects and…[Read more]

@rich-ono Hi, yes. I got a prescription in Illinois. Someone in this thread got it in Louisiana I think. I went to maybe 4-5 neurologists and my primary and none would prescribe it. Finally got it from an “alternate medicine” doctor who worked for a big clinic and now has 2 private ones of his own. The key is not to go to doctors in popular or big…[Read more]

@simon16 I would say kidney and liver blood tests are the most important and maybe vitamin D and calcium but try to get all your insurance will cover 🙂

After a few MRIs and other basic tests and my neurologist having a strong guess, I got a referral from my neurologist to meet and get a genetic test from a doctor specializing in genetics. He took 2 vials of blood and sent it out to a lab. A genetic counselor reached out to me with the results.

Ask a neurologist if they or someone else can take…[Read more]

That is great news! Are there any other side effects you’re feeling besides chills? Or did those already stop too? Was the blood test fine?

Thanks for the updates!

Hi, @shandrajamie Which company is closest to starting gene therapy trials? Just wanted to read up more on them, if possible. I keep reading on all these promising companies and none of them seem close to a good treatment option. 🙁

Etravirine or some similarly altered version designed for FA specifically is probably the most hopeful option I’ve…[Read more]

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.

Pure CBD or some THC (psychoactive component of marijuana) in it as well?

I get 1 gram of oil in a syringe from my dispensary with about 1:1 or 2:1 ratios CBD:THC. I squeeze out a grain of rice sized bit of oil and dissolve under my tongue or around my gums.

I feel as if I don’t get the best from just CBD, but that might just be me. I would use…[Read more]

@shandrajamie do keep us updated if the active medication is any good 🙂
I was planning on doing this trial but it was close to the end of enrollment and I was still a temp at my job so didn’t want to start missing days here and there.

@frankie-perazzola I got notified by email of the question you asked but couldn’t find it in this forum for some reason. I prefer sativa or hybrid. They say indica makes people less paranoid and relaxes them more, but not for me. I don’t know if it’s the FA, just me, or both but whenever an indica starts relaxing and “shutting down my body”…[Read more]

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…[Read more]

Just wondering @michsmith05 if I may ask, what insurance or area do you live in? Hopefully my insurance will pay some of the cost if I can get a prescription this Thursday.

I use medical marijuana since I was lucky enough to get a card in my state in the USA. Been using it for maybe 2 years. My FA sort of plateaued over the past few years. Not sure if it’s from the marijuana since I know it has neuro-protective and other medicinal properties or just because my FA decided not to progress, but the marijuana isn’t…[Read more]

@gunnhild Please do let us know if you feel better 🙂

I read the article this week and was lucky enough to find this forum while reading up on it.

My primary care doctor said she is not against the medication since it should have little to no side effects, it has already been tested and approved a long time ago, but she does want me to meet…[Read more]