Spinraza Update: Why I Still Get a Needle Jammed in My Neck Every 4 Months

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by Kevin Schaefer |

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A few days ago, I received my 17th injection of Spinraza (nusinersen), one of several SMA treatments approved by the U.S. Food and Drug Administration. Every four months, I go to the hospital for a maintenance dose administered via a cervical injection.

When I started this process in November 2017, Spinraza was the only drug available to treat me. Since then, research has evolved, and there are now two other therapies on the market, with others in clinical trials. One of these is Evrysdi (risdiplam), an oral treatment available to kids and adults with SMA.

This begs the question: Why would I willingly continue with something that requires a needle to be routinely jammed in my neck? Not only that, but I also factor in travel time to and from the hospital, pre-injection fatigue, and transfers in and out of my wheelchair. Surely, I would rather go with a less invasive method.

Note that every treatment decision that anyone makes is personal, and there are several reasons why I’ve opted to stay on Spinraza. Firstly, despite the discomfort I experience with each injection, it’s also something I’m accustomed to. Back in 2017, my greatest anxiety going into that first appointment was that I had no idea what to expect. I didn’t know if I would endure excruciating pain, lingering side effects, or even if my body would comply with the procedure.

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Seventeen injections later, those concerns are gone. Yes, it’s still uncomfortable getting lidocaine delivered while lying sideways on a CT scan table, but I know what to expect each time. I put on a relaxing playlist on the ride there, eat something beforehand, and let my medical team do their thing.

Secondly, starting a new treatment comes with all of the aforementioned uncertainties. Yes, something like Evrysdi is easy to take orally, but I have no idea how my body would react to it. I know many friends who have responded well to it, and that’s great. Nonetheless, each drug comes with potential side effects. With Spinraza, I have yet to experience any negative reactions. My body knows what to anticipate and blends well with this treatment. It’s a safety net that I’m not ready to let go of.

Lastly, while injection days are exhausting, it helps that they’re spread out to only three times a year. Compared to other medical appointments and procedures, this is manageable for me. If I were doing the needle-in-my-neck routine once a month, then I would be eager to switch to something else. But as it stands, I do just fine incorporating Spinraza days into my schedule.

There’s no single right way to go about pursuing treatment and managing life with SMA. Whether you even want to start one of these therapies is something you have to decide for yourself, after consulting with your medical team. My road to Spinraza is my own journey, as is my decision to stick with it. Now it’s just a matter of seeing what the future holds.


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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Comments

DIANA C ALBRECHT avatar

DIANA C ALBRECHT

I feel the same way. I deal with my treatment every four months, not daily fortunately. Also Spinraza has been very effective in my case. The procedure takes a total of 15 minutes and I leave with a band aid on my spine. No headaches or side effects. "If it ain't broke, don't fix it" LOL Looking forward to the day when there's a combo treatment that will also improve muscle strengthening. Hopefully it will be soon...

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