• SMA Treatment Journey

    Posted by deann-r on December 23, 2022 at 9:29 am

    Today is the sixth anniversary of when I learned about the revolutionary first-of-its-kind treatment for SMA. It’s hard to fathom that nine months later I was receiving the treatment.

    Spinraza may have been the first, but it wasn’t the last. Zolgensma and Evrysdi have since been approved as well. After being on Spinraza for 2.5 years, I decided to make the switch to Evrysdi since Zolgensma is still only approved for the littles. It boggles my mind that I’ve been on this medication for almost just as long. Considering the sharp decline I experienced before treatment, I don’t know if I’d be here today without it. Knock on wood, I haven’t been hospitalized since starting Spinraza and switching to Evrysdi.

    Each treatment has its pros and cons. None of them are a magic cure from what I’ve seen. Honestly, though, I’ll take what I can get. It is amazing seeing kids diagnosed and treated early running around.

    Personally, I feel Spinraza was more effective for me. Because of the challenges of acquiring Spinraza I’ve decided to stick with Evrysdi for the time being. Although I struggle with some of the side effects (mainly GI issues,) I’m overall satisfied sticking with it. I hear a high-dose Spinraza is in trials though, so that could be interesting.

    Where are you in your treatment journey? How effective has treatment been for you? I’d love to get your updates.

    tammy replied 1 year, 6 months ago 2 Members · 2 Replies
  • 2 Replies
  • tammy

    December 23, 2022 at 9:36 pm

    I’ve considered trying spinraza since I’ve never tried it before. Don’t know how that hurdle would be with insurance since it’s more expensive than Evrysdi. I also struggle with the annoyance of having to go to the hospital every so often to have the procedure done. What if I can’t make an appointment? What if someone who is supposed to drive me cancels? That type of thing. As far as Evrysdi, I have noticed absolutely no improvements or even small gains. Which is disappointing. Which is why I’ve considered trying to see if I experience any gains with Spinraza. As far as keeping us out of the hospital, I was really never one to have much issues when sick, therefore not needing to really ever go to the hospital. Except for when I was in grade school and high school and used to have stomach bleeding issues completely unrelated to sma. And the one time back in 2010 when I had the flu and couldn’t stop vomiting so decided to go and get hydrated for a few days. But have not been in a hospital since. I just wish I was one of those lucky people who got to experience some sort of improvement no matter how little

    • tammy

      December 26, 2022 at 12:48 pm

      Oops that was supposed to say I also struggle with the IDEA of the annoyance of having to go to the hospital to have it done. (it doesn’t let me edit my posts anymore)

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