SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Columnist Reflects on 10th Spinraza Injection

  • deann-r

    January 28, 2019 at 3:08 pm

    I’ve pretty much had a carbon copy experience as Alyssa.  Even though I’ve had 7 prior injections with minimal discomfort, it’s always in the back of my mind that maybe this time it won’t be as easy.  When I hear stories of spinal headaches or ongoing pain that some have experienced I almost feel guilty it’s gone so well.  I also feel grateful it’s gone so smoothly.

    Lately I haven’t felt the results from Spinraza as I had  from previous injections.  I have several theories behind this not least of which is that it’s winter and these bulky clothes are hindering my movement.  Overall the slight improvements make it worth continuing for me.

  • kelly-miller

    January 29, 2019 at 12:23 pm

    I’m on the other side of Spinraza – the side that doesn’t get injections. I debated and debated last year over whether to start this or not. I did all my research, I wrote my pros and cons list. Even some of the minimal improvements people were seeing sounded like they might be great for me. Until… I started hearing about the injection side effects. I had started the process of getting genetic testing when I first read some of the earliest volunteers’ experiences. I read things like migraines, neck pain, severe back pain, dizziness. I went back to the pros and cons list.

    While I do believe Spinraza is a huge advancement for SMA, I don’t believe that it’s for me at this time. I deal so much with chronic pain (and last year was a particularly rough year for that) that I just couldn’t imagine subjecting myself to something that could possibly give me more, new pains. I wanted to be one of those who was so brave to experiment with their bodies, but I just couldn’t get past the idea that it might cause me ongoing, severe pain. I realize that those suffering that much were extremely rare, but knowing my luck, I would be one of those rarities.

    As soon as I confidently decided not to go forward after the genetic testing was completed, I read a new article about a new drug that seemed even more promising: Zolgensma. This new gene therapy injection would be a one-time shot, and it didn’t look like there would be any lasting side effects. While this new one is more pricey for its dose at $2 million, it would only be a one-time payment. I’m willing to wait for the trials to be finished and the red tape to be cut and the treatment to be approved for those other than just type I. I can’t feed myself anymore either, but I can still talk and breathe without assistance or struggle, so I have a little time to wait. I’m praying Zolgensma is happening soon, and I’ve already gotten my doc thinking about.

    • kevin-schaefer

      January 29, 2019 at 12:35 pm

      Thanks for sharing Kelly. It’s definitely a personal choice, and there are others in the same boat as you. I had a lot of the same reservations, and it took me some time to decide to go through with it back in 2017. Zolgensma is definitely promising, and I hope it works out for you eventually.

  • lupa-f

    February 1, 2019 at 1:01 am

    I just scheduled what will be my 6th treatment at the end of February. Mine have gone okay so far, I don’t have any spinal rods or anything so it’s more or less straight forward, but the last time I guess I was lying on the table a little differently and it closed up the spot they’d used previously. They kept trying to stick it through there, but kept hitting bone and sending shocks of pain down my legs and my legs ached for about 2 weeks after that. I could still function, but it was annoying. Each time I’ve felt like I’ve been on the edge of getting headaches for about a day or two afterward whenever I exerted myself, but if I backed off what I was doing the feeling would go away.

    My biggest issue with the process is the hospital I go to makes me get there 3 hours early for blood work and then keeps me for 2 hours after which means I get stuck either in morning or afternoon rush hour depending on my appointment time. It makes a 40 minute trip into nearly 2 hours.

    I’ve definitely noticed improvements though so even with the hassles it’s been worth it. I live on my own, no assistants or anything (I have type 3, I stopped walking about 12 years ago), and the past couple years I’ve been really close to feeling like I couldn’t do it any more. Especially in winter I would have days where I felt like I couldn’t do the things I needed to, but so far this year I’ve felt okay. I can’t really tell if I’m still improving, but I’ve already gotten enough strength back that I’m sort of good with where I’m at. The main thing for me was to just stop getting worse and it’s definitely done that.


    • deann-r

      February 1, 2019 at 11:04 am

      Lupa, it certainly does make for a long day.

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