• Posted by steve-hoffman on June 30, 2020 at 5:42 pm

    As I sit receiving my 24<sup>th</sup> Radicava infusion, I ask myself whether there is any benefit continuing treatment. I’ve experienced a significant gait disturbance over the last ten infusions. The rate and degree of decline is scary compared to pre-Radicava decline overall.

    There is so little published about Radicava online and when some of the side-effects of Radicava are no different from the symptoms of ALS, it is difficult to make life affecting informed decision whether to continue treatments. As for me, quality of life is so much more important than prolonging life.

    Has anyone else been faced with a similar decision on continuing with Radicava? Do the side-effects like gait disturbance go away when off of Radicava?  I’d love to hear from you. Thanks!

    Deleted User replied 3 years, 2 months ago 2 Members · 1 Reply
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  • Deleted User

    Deleted User
    July 9, 2020 at 3:28 pm

    Hi Steve,

    Gait disturbance was the primary concern of mine, also the method of administration.  When I asked my Neurologist about a possible side effect of gait disturbance, he pooh-poohed it saying “everyone with ALS has gait disturbance”.  I can walk some now and I didn’t want to change that.

    I’m very sorry you’ve experienced that side effect.  I hope it goes away soon.

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