Metformin prophylactically?

[Lenka]

Hello, I wanted to ask if anyone is taking metformin prophylactically and at what dose?
My mother died at ALS, she had a very fast course ... Now I found out that her brother has FTD and unconfirmed ALS ...
I have two small children, I'm scared of it ... thank you very much for any answer ...

 

[Nikki J]

You are assuming that your mother had C9orf72. I hope your uncle is being tested then you can decide whether to test yourself if he has it.

there are no human trial results for c9 yet. The data we have is from mice which unfortunately rarely translates to humans. There are c9 PALS taking metformin off label because we can’t wait for results. Given the recent aso results where they lowered the same biomarker metformin is hoped to target and made C9 PALS worse I wouldn’t jump to take it especially as 1 you don’t know if your family carries c9. Even if there is a family mutation there are others that cause ALS and FTD 2 you don’t know if you have inherited anything even if there is something 3 the pathophysiology of c9 is not fully understood and right now, until we get data from the biogen trial things are uncertain and 4 any medication has side effects