SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Spinraza Dose #8: Another Successful Maintenance Dose

  • Spinraza Dose #8: Another Successful Maintenance Dose

    Posted by kevin-schaefer on May 23, 2019 at 7:00 am

    Happy Thursday everyone! Hope everyone is having a great week.

    Yesterday, I went in for my eighth Spinraza injection. It went well, and there were no complications. As I’ve written about in previous columns and forum posts, I do cervical injections (shots through my neck). Due to complications from my spinal fusion surgery, which I had in 2005, I’m unable to do the standard spinal tap injection. The cervical method has worked great for me, and it’s something you may want to discuss with your doctors. Know that there are alternative injection methods for those of us who are adults with SMA.

    What questions do you have for me, or about Spinraza in general?

    kevin-schaefer replied 4 years, 12 months ago 3 Members · 5 Replies
  • 5 Replies
  • mehdi

    May 23, 2019 at 9:55 am

    Which improvement do you feel ?

    • kevin-schaefer

      May 23, 2019 at 10:16 am

      Hey Mehdi, thanks for commenting.

      So for me, my energy levels have improved significantly since I started Spinraza. I feel better throughout the day, and I don’t experience fatigue nearly as much as I used to. I also am able to sit up a little straighter. When I go for aquatic therapy every week, I’m able to sit unassisted on the bench that’s built into the pool. So yeah, it’s a lot of little things for me.

    • kevin-schaefer

      May 23, 2019 at 10:25 am
  • deann-r

    May 23, 2019 at 3:41 pm

    Welcome to the million dollar club! Isn’t it hard to believe you’ve had 8 doses? I’m wondering when we’ll stop counting doses and start just saying the amount of time we’ve been on it.

    • kevin-schaefer

      May 23, 2019 at 3:58 pm

      It’s crazy! And heh, I’m pretty much already at that point. The time between this injection and the previous one really flew by.

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