• Treatment Check-in

    Posted by deann-r on February 3, 2022 at 11:43 am

    Curious, where are you in your treatment journey? Just over a year ago I switched from Spinraza to Evrysdi. After struggling with the gi side effects I think I’ve found a regimen that works for me. Personally I liked Spinraza better, however don’t feel the difference is enough to warrant switching back.

    sasha replied 2 years, 2 months ago 3 Members · 2 Replies
  • 2 Replies
  • dennis-turner

    February 3, 2022 at 12:06 pm

    I had my 9th Spinraza injection last month. Can’t say I feel like it did it’s magic this time.

    Also feel like the 4 months between shots, might be too long. By the last two weeks before my next injection I am pretty much exhausted and struggling to get through the day.

    With the Eversdy I would be concerned about cost, and those pesky GI issues I keep hearing about.

    Spinraza usually seems to work and I would hate to change without hearing more from people who have been taking Eversdy  and had been taking Spinraza.

    Incidentally, my Neuro suggested we might in the future have a cocktail to include Spinraza and Eversdy and other meds which might be coming along.

    To think that we live in a time where SMA even can be slowed down.


  • sasha

    February 6, 2022 at 4:08 am

    cocktail to include Spinraza and Eversdy

    This makes no sense, they affect the same thing. Evrysdi is good when Spinraza is too difficult to inject, but it often has side effects, so why use it when you can use Spinraza.

    The combination makes sense for meds like Apitegromab.

    For wearing out, I think there are some trials looking into increasing dose or frequency.

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