Ezogabine (Retigabine)

[KatieNBoyd]

Has anyone done or does anyone know about this clinical trials.
Clinical Trial of Ezogabine (Retigabine) in ALS Subjects, It is on the ALSTDI website and has been forwarded to my PALS by a family member.

 

[Nikki J]

There is a previous discussion if you do a search. The background on it is it was found to decrease excitability in IPS cells from MND patients. I THINK the benefit was particularly noticeable in FALS. I know I was told that there had been some discussion about limiting the trial to FALS but it was decided the chance of benefiting SALS was great enough to include them.

My sister took it off label for 1.5 years. I do think she had a plateau during some of that time. I don't know of course whether retigabine had anything to do with it. I have not heard any buzz from the current trial

 

[KatieNBoyd]

I did a search for both Ezogabine and the other and had 0 results. Sorry, could it be listed as something else?

 

[Nikki J]

A search for retigabine yielded this page?
eta broken link removed

 

[KatieNBoyd]

Thanks Nikki But when I click on it I get "Sorry - no matches. Please try some different terms. "

 

[Nikki J]

Sorry it worked when I posted it but must have been saved in my browser. Still, enter retigabine in the regular search not google. A lot of threads came up including one called retigabine