I read that a few years ago there was conducted a medical study regarding Tasigna nilotinib and hereditary ataxia. I have heard many positive experiences from people with hereditary ataxia who have used the medication. I myself have Friedreich ataxia.
* Friedreich's ataxia is an inherited, rare cause of ataxia. People with ataxia have trouble coordinating their movements. Ataxia occurs in a variety of conditions and diseases. Some symptoms that may occur are:
Join us for a webinar on the Skyclarys approval process for adults with FA
On 23rd July, Ataxia UK is hosting a webinar on the UK approval process for Skyclarys in adults with Friedreich's ataxia (FA).
The webinar will give an overview of the timeline for the UK approval process for Skyclarys in adults with FA. It will be hosted by Realise Advocacy, an organisation with expertise in advising charities on the process of drug appraisals in the UK. There will be an opportunity to ask questions to Ataxia UK and Realise Advocacy.
I found your question the other day and began to do some research, no real results, but several first hand positve experiences from fellow SCA patients. So I just asked my neuro if he could prescribe it off label and he said he would but doesn't feel comfortable prescribing something that he doesn't know anything about. So it seems, he should have really said no. Who would anyone suggest asking to prescribe it if my neuro won't? My regular GP?
Actually looked more in depth on it, there is a reason why there are so few of us willing to try it off label. $20,000 USD for a 28 day supply, yikes!!
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Peripheral neuropathy?
Newby to this forum
Confused about definition of Ataxia
Cerebella ataxia 
Partial Possible Treatment for some SCAs.
