• Bill posted an update 2 years, 4 months ago

    I just read the Radicava report. Frankly angers me that after 2 years of experience with 1000’s of pALS, no one knows actual effectiveness? Instead a rehash of original trial. The rub for me is my progression is slower than even the non placebo drug trial pALS. Would it benefit me? The real life answer is out there but seems we as pALS aren’t worth collecting the data. My Doctors don’t think it would be of much benefit to me. Sorry, just a pet peeve of mine on informed choice on a very expensive and difficult treatment.

    • Hi Bill, I too am on Radicava, just finished round 2. Diagnosed in December, but symptoms for a year.
      I agree, they need more information of effectiveness for Pals,
      I have a very nice woman representing Radicava to via phone, binders and house visits, but she just told me from the start that I won’t know if it is working to slow my progression! They say up to 33% but I want to feel the effectiveness of enduring the infusion therapy!

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