Anyone on riluzole or amantadine? I'd like to know pros and cons.
-Optomistic
What are they for?
Treatment of "ataxia".
My neurologist will prescribe "nothing" for my ataxia. It is a progressive neurological disease with no cure. He maintains that developing coping skills will help. I have learned a lot from my physical therapist. The only prescription I have to deal with ataxia, prescribed by my primary care physician, is an anti-anxiety medication, which helps me get to sleep. Sounds harsh, but at least no high prescription medication bills.
I take this infusion called IVIG because my ataxia is believed to be auto-immune induced. Turns out, I have a higher than normal amount of :bad" antibodies. But so far, I havent noticed a marked breakthrough... Riluzole was investigated by an Italian doctor/reasercher in Rome in 2013. He got some NIH research funding for his work but did not seem to write a report. I can give you his email address.. Amatadine has been mentioned in this forum. For what its worth, my neuro says that in my case, there are more potent antibody surpressors but these, he insists. can be dangerous. I have no idea to which drugs he is referring.
This letter was written to me in 2012. Subsequent emails to this doctor were not answered.
Dear Neta,
We are carrying out the second, confirmative study on the efficacy of riluzole in genetically identified cerebellar ataxias. Its design includes many clinical and paraclinical evaluation to verify pre-specified end points (that is, frequent site visits here in Rome for follow-up). Hence, we are enrolling Italian citizens for practical reasons. The study will take about 2 years, hopefully confirming the positive results that we obtained in the pilot trial. If this will be the case, we can plan to move to clinical practice for all the patients. No problem to keep in touch in the meanwhile.
Sincerely,
Giovanni Ristori
Dear Optomistic, I don't take any prescription meds for my ataxia. At one time I was prescribed Baclofen for muscle spasms, but it made me more tired than I already am, so I no longer take it. I have Sporadic Cerebellar Ataxia (unknown cause) and was diagnosed eleven years ago. My symptoms affect me 24/7. Physical therapy has helped (when I've attended), and I exercise for strength and balance. I also do some stretches each day. I try to eat as healthy as possible, and take some over-the-counter vitamins and supplements. Sorry I can't be of more help to you..., ;o)
Dear Neta,
what was the outcome?
I have no idea. The guy subseqeuntly never responded to me. The NIH site aid he never filed a report. I will write to him again. Good idea. I mean now the 2 years of study must be over, N
Optimistic said:
Dear Neta,
what was the outcome?
HI I take amantadine 100 mg twice a day. I was told by my neurologist possible sca-6. I think it has helped me but everyone is different --- crazy dreams---- major side effect for me.
Dear Steve, Did your ataxia improve or did the progression stop now that you're on thiamine/ B1? Thanks for the info..., ;)
Dear Steve,
I am curious too...in regards to progression.
I take Amantadine 100mg twice a day, for 6 weeks now… I dont get as (stiff) & it seems to help with with my balance, however my doctor is not sure of what type of sca, i have & i havent had any side effects… hope this helps.
Thank you!
Hi, I took the Riluzole at my Doctors request, and it did nothing for me. Sorry to say that I don't think there is a "Magic Pill".
amantidine did absolutely nothing for me, I am on Dantrololene, a mild muscle relaxant for spasticity, and it is wonderful!
I took Baclofen and the sme as with you, it made me severely groggy/ sleepy, which in turn causes 2 bad falls. They switched me to Dantrolene and it helps tremendously without being overly sleepy
rose said:
Dear Optomistic, I don't take any prescription meds for my ataxia. At one time I was prescribed Baclofen for muscle spasms, but it made me more tired than I already am, so I no longer take it. I have Sporadic Cerebellar Ataxia (unknown cause) and was diagnosed eleven years ago. My symptoms affect me 24/7. Physical therapy has helped (when I've attended), and I exercise for strength and balance. I also do some stretches each day. I try to eat as healthy as possible, and take some over-the-counter vitamins and supplements. Sorry I can't be of more help to you..., ;o)