Retigabine

[Kitchener]

I have been taking retigabine off label for a year (500mg/day). Here's what I've found:
1. It does not stop disease progression
2. It might slow progression but I can't be sure (n=1)
3. It definitely reduces tremors, spasms and cramps

 

[Nikki J]

Do you mean 500? Just wondered as at least in the US it comes in 50, 200,300, and 400 mg. of course you could be taking a 200 and a 300? Did you start lower if so and work up?Also are you FALS or SALS? If FALS what is your gene defect? Thanks for sharing

 

[Kitchener]

Hi Nikki
I'm SALS
It comes in 100mg as well
I started at 3x100 for 2 weeks - breakfast, after lunch, bedtime
Then 100,100,200 for 2 weeks
Now 100,100,300

 

[Nikki J]

Thanks again for sharing. Interesting that you have 100 mg available there. Your neuro is much more aggressive in dosing. My sister has been on it for 9 months started at 50 now 50 twice a day. I am glad it helps your symptoms. I hope it is slowing progression. Do you know if a lot of other patients of your neuro take it? And if so what their experience has been?

 

[Kitchener]

I'm pretty sure I'm the only patient my neurologist has on retigabine, as it was my initiative after reading the Harvard stem cell study last year. It's not actually available in Australia, I get it mailed from a pharmacist in England. I'm not sure if my neurologist is aggressive or your sister's is timid. If you have epilepsy the recommended dose is 600mg-1200mg/day. From what I've read the upcoming retigabine trial has 2 cohorts - 600mg/day and 900mg/day. As an approved drug there is loads of safety data on the GSK and European Medicines Agency websites.

 

[Nikki J]

Thanks again for responding.