Tasigna (Nilotinib) as a treatment/cure for FA?

[Wheelboy010]

Hello dear,

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:

Muscle weakness in arms and legs

Coordination issues

Limited eyesight

Hearing loss

Slurred Speech

scoliosis

Diabetes mellitus

Cardiac disorders (atrial fibrillation, cardiomyopathy)

I am very interested in Tasigna nilotinib.

I would like to know whether this medication will also have positive effects for me?

Thank you in advance!

[wobblybee]

Omaveloxolone.. is the current treatment for Friedreichs Ataxia. It is approved in Europe..but not yet in the U.K.

skyclarys.com

investors.biogen.com/news-r...

There are no results for this trial

clinicaltrials.gov/search?c...

[Tiggywinkles in reply to wobblybee]

It's got approved (Skyclarys) in the EU in February but still waiting for it in the UK.

[wobblybee in reply to Tiggywinkles]

🙂Thank you…sincere apologies for the previous post.

investors.biogen.com/news-r...

[Tiggywinkles in reply to wobblybee]

No problem, I have FA so know EXACTLY (!) what is happening with the drug approval 🙂

[wobblybee in reply to Tiggywinkles]

🤔Did you know about this..

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.

To register for the webinar, click here: us02web.zoom.us/meeting/reg....

#AtaxiaUK #AtaxiaWebinar #AtaxiaUKWebinar #AtaxiaResearch #AtaxiaUKNews

[Tiggywinkles in reply to wobblybee]

Yes thanks, I will be joining it to see what is happening and if there's anything to be done to help with the approval.

[krivennneee in reply to Tiggywinkles]

After Gleevec quit working after five years and no remission, Tasigna has been a wonderful medicine. Thinning hair, a little hip pain, and some blisters/itching... but so much blessing to have achieved molecular remission in 4 mos. and continued for 3 yrs. now. Doc has reduced my dose from 600 to 400 mgs to see if rashes stop and pain subsides. Hopefully, won't have to go back up. Tasigna without a prescription - onlinecheappills.com

[sonofapeter]

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?

[sonofapeter]

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!!