SMA News Forums Forums Treatments and Research Spinraza (nusinersen) How did you learn about Spinraza?

  • How did you learn about Spinraza?

    Posted by deann-r on June 21, 2018 at 9:12 am

    Scrolling through my Facebook feed Christmas Eve Eve 2016 an article made me do a double take.  “FDA Approved New Treatment for SMA.” Skeptical I clicked on the link.  Sounded legit.  In fact, sounded like it might actually be worth pursuing.  After doing some research I decided to go for it.  An uphill battle was about to commence, and in September 2017 I became a conqueror! With lots of help I conquered the system and little by little with the help of Spinraza am conquering SMA.

    Let me know how you found out about Spinraza!  Did you decide to pursue it?  Did you conquer the system or still fighting the battle?  Each story is unique and I’d love to hear yours.

    ryan-berhar-2 replied 5 years, 9 months ago 3 Members · 5 Replies
  • 5 Replies
  • kevin-schaefer

    Member
    June 21, 2018 at 12:31 pm

    With my family and I being really involved with the SMA community, I found out about the news right away. It was all over my social media feeds, and of course on the Cure SMA website. Ever since then, it’s been a roller coaster of emotions, ups and downs, and ultimately successes.

    Back when it was first announced, I was excited for the community as a whole, but inside I was unsure if it was the right thing for me or not. I knew that even though it had been FDA-approved, there would still be insurance-loopholes to work around (and there were). Yet beyond that, I had reservations about the injections themselves and the time-commitment. It helped that there were other adults with SMA who had the exact same concerns and anxieties.

    The next few months consisted of a lot of back-and-forth phone calls with Biogen and my insurance provider, and my Mom was fiercely determined to break past these barriers. Fortunately, Biogen has been great to work with from the beginning, and I have a fantastic case manager. She even understood my concerns and anxieties, and has always been happy to answer any questions.

    Eventually I got approved in July 2017, and I started my injections in November of that year. During those months in-between, I consulted other adults with SMA who had been receiving Spinraza and asked them about their experiences. I was still nervous, but I knew that just stopping the progression of my SMA would be huge.

    When the time came for dose #1, I went in not knowing what method the doctors would use to administer the drug. They first did some spinal x-rays to see if there was an opening there, but there wasn’t. I had spinal fusion surgery in 2005, and the rods in my spine are too firmly implanted.

    Instead, the radiologist performed a cervical injection, which is the method I continue to use. It was a little nerve-wrecking at first, but each injection has gone incredibly smooth for me. I know the cervical injection method isn’t for everyone, but I recommend that other adults with SMA at least look into it.

    As someone who had major anxieties about the entire process and went back and forth on whether or not I wanted to pursue the treatment, ultimately I’m quite glad I went through with it. I now have more energy than I did before receiving the treatment, and my speech has improved. Beyond that, just knowing that the progression of my SMA has stopped is huge. If anyone has any questions about Spinraza and my experience, feel free to message me. I’ve also attached links to previous columns here.

    https://smanewstoday.com/2017/11/21/sma-and-my-first-spinraza-injection/?amp

    https://smanewstoday.com/2018/05/15/sma-stabilizing-my-first-spinraza-maintenance-dose/?amp

  • ryan-berhar-2

    Member
    June 21, 2018 at 10:19 pm

    I went to the 2016 conference, and that seemed to be the when Spinraza actually gained  traction. I don’t want to go into great detail here (I have chronicled the journey on my column) but I have ultimately decided that I’m done pursuing Spinraza. I believe it’s just not meant to be for me. I’m done jumping through hoope. The entire thing has been one step forward and two steps back. I’m just done.

    • kevin-schaefer

      Member
      June 22, 2018 at 11:13 am

      If it helps the research symposium at the conference this year was really encouraging. There are other drugs in the pipeline which could really move forward in the coming months/years. Especially pay attention to the AveXis gene therapy and the developments with Cytokinetics.

    • deann-r

      Member
      June 23, 2018 at 12:00 pm

      Totally get where you’re coming from Ryan.  It certainly is frustrating when you have to struggle and fight for something you’re not even sure what the effects will be.  For me I had been struggling the previous few years, so knew Spinraza was almost like a Hail Mary for me and was worth the fight.  As new drugs go through the approval process I hope access becomes easier for everyone.  Until then we just have to continue living our lives.

  • ryan-berhar-2

    Member
    June 23, 2018 at 5:18 pm

    Yeah I’m hopeful for future treatment. Lots of them in the works!

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