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Treatment Journey Update

Where are you on your treatment journey? Have you begun treatment or are you weighing your options?

Do you have experience switching or stopping treatment? If you stopped, why did you?

Tell us your story below.

  1. When I was in the hospital last year, I had to stop my Evrysdi because they couldn't order it from their pharmacy. I had terrible muscle spasms because of it, but thankfully I was able to go home a few days later and get back on it.

    1. Those muscle spasms sound really painful. Have you experienced them at all since the Evrysdi? I'm glad you were able to leave and rest in the comfort of your home after such a painful experience. Warmly, Abby (Team Member).

  2. I tried Spinraza, but due to my weight, the spinal injections were very difficult to perform, leading to several failures during my second treatment. At that time I demanded that they stop trying, as there had been 8 attempts to pierce my spinal column which failed. The medicine had already been removed from refrigeration at my doctor's discretion, so I was eventually upgraded to a surgical suite, where the procedure was performed easily. However, due to this debacle I was removed from the treatment program because, as my doctor told me, I was not dedicated enough.

    I now take Evrysdi, which is shipped to my door and administered orally. If I had to do it over again, I would not have tried the Spinraza, but it was the only option available at the time.

    1. I talk to my representative at least once a year and she has told me that my condition should improve based on internal studies, but I have not improved by my own observation. It does seem that the Evrysdi has halted my regression of ability at the exact point at which I started taking the medicine.

      Being a type 3, I seem to have quite a bit of trouble finding reliable information regarding currently marketed medicines, as they were brought to market as life-saving alternatives for type 1 and 2. I hope that I don't sound too ungrateful when I state the observation that these drugs seem to have less profound effects in semi-ambulatory individuals.

    2. That makes total sense. I think being a type 3 presents just a completely different set of challenges that isn't talked about enough in the SMA community! We're really glad you're here to shed light on these challenges and frustrations. Please keep us posted on how you continue to feel and face things in your daily life. We're here to support you! All the best, Abby (Team Member).

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