-
Do you take edavarone (radicawa) treetmen?
I want to start edavarone treatment in USA.
I bought 8 months package in Japan. I visited ALS clinic there. It is cheap there and it is possible to buy it remotely.
I was told that it can slow degradation up to 40 percent.
Do you have an experience of taking it?
Does it help you?
-
4 Replies
-
I have been on Edaravone for almost 3 years, basically a couple of months after diagnosis. If you look at the progress as measured with the ALSFRS you would probably conclude that my rate of progression is somewhat slow: however as we do not know what the progression would have been without Edaravone in my case I cannot really say if and how much Edaravone has helped. A study is being run in the US which could help us understand this issue, hopefully!
-
I’ve been on the infusions since Dec. 2019.
As Martino said “as we do not know what the progression would have been without Edaravone in my case I cannot really say if and how much Edaravone has helped.”
I just figured I’d give it a try.
-
I have been on Radicava since October 2017, right after it entered the US. I have to say  I think it’s been beneficial for me. In January 2016, I was DX’d with PLS. Not sure if PLS vs. ALS makes a difference or not. There is a trial for Radicava efficacy called REFINE-ALS to get a better handle on the slowing of progression with this drug. Good luck with your infusions.
-
Thank you a lot for replays.
I still think about it ….
Log in to reply.