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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 2 voices, and was last updated 5 months ago by Alyssa Silva.

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    • #22592
      Alyssa Silva
      Keymaster

      I’ve pretty much gotten my Spinraza cycle down to a science. It goes a little something like this:

      0-2 weeks: I begin to feel slightly stronger.
      2-6 weeks: I’m on the upswing and feeling great. My lungs are stronger. I’m more energized. Fatigue is no longer my biggest concern. My appetite has increased.
      6-8 weeks: I’ve plateaued.
      8-12 weeks: The effects slowly wean off. I’m a little more sluggish. Still feel some strength but have definitely started on the downhill.
      12-16 weeks: I nosedive.

      By nosedive, I mean I hit a slump— fast. The effects (or benefits) of Spinraza are no longer weaning off, they’re pretty much gone. I’m slower to complete tasks. I’m sleepy more often than not. And I start to revert to the way I was before I started receiving Spinraza 3 years ago.

      If you are receiving your Spinraza maintenance doses, do you start feeling lethargic or tired as you approach your next Spinraza injection? If so, would you be willing to share your experiences with our forum members?

    • #22605
      Rachel Markley
      Participant

      Mine is Wednesday and only my second maintenance dose but I seem to slump around week 12 as well and by this last week I can hardly function 🙁

    • #22615
      Alyssa Silva
      Keymaster

      Interesting! I’ve heard that they’re testing (or soon going to start) higher doses and/or at a more frequent basis in patients for this reason. Glad to know I’m not alone! There was one time I was late for a dose, I declined so rapidly that I was honestly scared. This treatment has really improved my life for the better. Good luck on Wednesday!!

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