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    • #15632
      Igor
      Participant

      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?

    • #15655
      Martino Caretto
      Participant

      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!

    • #15662
      Elizabeth Benz
      Participant

      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.

    • #15677
      Christine Moretti
      Participant

      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.

    • #15681
      Igor
      Participant

      Thank you a lot for replays.

      I still think about it ….

       

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