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  • gary-gehiere

    Member
    April 8, 2019 at 1:28 pm in reply to: 9 Things to Know About the ALS Drug Radicava

    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!