Anyone know about the efficacy of this drug for CA? Google this drug + CA.
Thank you neta . This seems like the best news ever! Has anyone tried it?
Acetyl de luciene - isoleucine -tanganil
Re the National Ataxia Foundation fact sheet - Medication for Ataxia Symptoms
At the moment, this doesn’t appear on the list
But, I did find the results of a study done in 2013 which said, after no reported
side effects, it was concluded that the medication did significantly improve ataxia
However, this needs to be confirmed in placebo controlled trials.
So, it looks as though the jury is still out.
It doesn’t stop us making enquiries with our respective Neurologists.
yes we have. spoke to a Dr. in Germany. they give it out to their patients. we haven't been able to get it here. do you know where we could get it here?
After much research I’m unable to find this drug available in the U.S.
It could be that it has an an equivilant available under a different generic name.
It’s said to be manufactured in France by Biogaran, Mylan and Sanofi Aventis.
It is frustrating but speaking to a Pharmacist, General Practitioner or Neurologist seems the best
option, for now.
We should always bear in mind, although as adults we’re free to ‘experiment’ with
medications not actually prescribed for us personally, there are children who use this site.
It’s all too easy to ‘get carried’ away by recommendations, a younger person is vulnerable
and is often unable to make informed decisions. What if a young person with SCA hassled their
parents for a medication, somehow they obtained it without prescription and it actually did the
Many of us here would resort to desperate means for some relief but is advocating obtaining a
drug via the Internet, which being honest, we don’t know how will react with us personally, a good idea?
Best Wishes xB
Neta, can I please draw your attention to the heading Site Etiquette.
The moderator team has deleted several responses from this discussion and is closing this discussion to further responses. It is not responsible to post information on how to access medications or supplements that members' doctors have not approved for them. The purpose of this site is to offer information and emotional support, not to push others to unproven treatments based on anecdotal evidence. Please review both our guidelines and site etiquette for further clarification.