My First Spinraza Maintenance Dose

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by Kevin Schaefer |

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Kevin Embracing my inner alien

After my first injection of Spinraza (nusinersen) last November, I posted on Facebook to tell all of my friends and family how it went. Amid the “Glad it went well!” and “Praying for you” comments, my former youth pastor said that he couldn’t help but think of the therapy’s name as “Spinjitzu,” like the LEGO-based series, “Ninjago.”

“So just know when you post about your injections there is at least one person visualizing you whirling in a tornado as a Lego character lol.” This was by far my favorite Facebook comment of 2017.

Nevertheless, there is a certain sci-fi feel to each injection. Between the flashing lights from the CT scan machine, the high-tech Hoyer lift that’s used to transfer me from my wheelchair to the operating table, and the tiny needle that goes in just a few inches below my head, each appointment is like a comic book or an episode of a J.J. Abrams show. Every time I feel a dose of Spinraza flow through my insides, I’m waiting for it to turn into some form of gamma radiation and transform me into the Hulk.

Unfortunately, that kind of mutation hasn’t happened yet — the process is still going smoothly after five injections. Though there haven’t been any major changes in terms of my upper-body strength, my energy levels seem to be steadily improving. Beyond that, knowing that my SMA won’t progress any further provides me with a strong sense of comfort.

As far as how this first maintenance dose went last week, the process was the same as all four of my loading doses. My mom and I arrived at the hospital a little before the scheduled time for the appointment, checked in, and waited for one of the assistants to call me in. During this time, we were also able to talk with my Biogen representative for a few minutes. She was making rounds that day to see all of her patients who were having injections, and it was good to share updates with her and discuss the overall process.

From there, the radiologist’s assistant came to explain the procedure to me, which is something they’re required to do for every injection. It’s a bit annoying to hear the same explanation over and over again, but I understand that it’s protocol. A few minutes later, they brought me into the operating room for a good old-fashioned shot in the neck. I’ve written previously about how the cervical injections have worked well for me, and that they’re much less painful and intimidating than they sound.

Granted, this time did take a little longer than the previous injections. Given that the needle has to be placed in exactly the right spot for the medicine to enter my system effectively, sometimes it requires a little fidgeting. The tiniest millimeter can make all the difference, which was the case here.

It took some extra time for the radiologist and his assistants to get the needle in just the right spot. It didn’t hurt much, but the biggest challenge was just staying still during that time. Even talking was a challenge, and as such, I couldn’t chat with the doctors and ask them how it was coming along. I had to stay still and silent, neither of which are things I’m terribly good at (unless I’m watching a movie).

They eventually did get that tiny needle in the magic spot, and moments later, I felt the tingling sensation of the medicine flowing through my insides. As with the previous procedures, the actual Spinraza injection was pretty painless. If anything, it was a little hot when the medication went in, but it was over before I knew it.

My new online dating profile pic. (Photo by Mom)

After each injection, I’m required to remain in the hospital for an hour and lie down. I rested for a bit and sipped Mountain Dew, and my mom insisted on taking a picture of me dazed and drugged up and posted it on Facebook. Thanks, Mom.

The rest of my day consisted of chilling in bed and watching Netflix, but that’s about my limit for how long I can do nothing. The next day, I was back to work, and that weekend, I hung out with friends and co-hosted a panel for my podcast on Free Comic Book Day.

Time will tell if my Spinraza treatments will help me get back some of the strength I’ve lost to SMA over the years, but regardless, I’m going to continue living my life to the fullest.

If you have been receiving Spinraza or have questions about the treatment process, check out these discussions in the SMA News Today forums.


Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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