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    • #11279

      The drug, Radicava (edaravone), has been found to slow down the decline of physical ability in ALS patients by a third. Here are some important things to know about Radicava.

      What do you know about Radicava? Have you tried it? If so, how did it work for you?

    • #11301
      Glen North
      Participant

      Yes, i was on Radicava from September 2018 until February 2019.  I quit taking it because it wasn’t doing anything.  Reports from from the other 200 patients on it in Canada show nothing positive either.  Unfortunately I believe it is an overhyped product that MT Pharma wants o make money on.  There is growing controversy in that it may do more harm than good.

      • #11311
        Amanda
        Keymaster

        Thank you for sharing your experience with the members.

      • #11337
        Gary Gehiere
        Participant

        I have just completed 9 months of edaravone (Radicava) IV therapy here in Canada, sponsored by the manufacturer, MTP. No side effects were identified. People ask ‘What about the benefits?’ I was diagnosed with bulbar onset ALS in April, 2018, the same month in which Radicava was approved for use in Canada (one year after US approval) and treatment started in July. (Radicava is scheduled to be included in our provincial drug program this month and I expect my therapy will continue.)  In order to track the ‘benefits’,  I set up my own schedule of biomarkers using a spreadsheet so every day I assess and record my own stats. It helps me to stay objective about the so-called progression and focus on positive. Has Radicavada delayed progression? Without objective biomarkers, I can’t tell for sure – but even “no change” from yesterday on a single line item on my schedule is a positive. So I choose to stay the course of treatment, live up to my privileges  and enjoy the day!

         

    • #11303
      Mary Jo Peterson
      Participant

      I have been using Radicava since July 2018. I have an in-home nurse access my prt at the start of each round, and do the rest myself. It’s convenient for me, thankfully covered by my insurance, and makes me feel like I’m somewhat in control of my situation. My progression is slow and my Neurologist thinks it may be related to the Radicava. Who really knows for sure since each case is different?

      • #11312
        Amanda
        Keymaster

        Thank you for sharing your experience.

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