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This topic has 7 replies, 6 voices, and was last updated 1 month ago by DeAnn R.

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    • #23764
      Alyssa Silva
      Keymaster

      I thought I had it figured out.

      I’ve gone back and forth for quite some time now on whether to make the switch to risdiplam once it has been approved. After much consideration, I figured I’d stay with Spinraza and see how risdiplam plays out in other adults before diving in myself.

      There are many reasons for this, but in a nutshell: Spinraza hasn’t had any detrimental effects on my body so I wouldn’t want to rock the boat. Also, I was the first adult to get Spinraza in 2016, and the constant fear of the unknown as far as what would happen (good or bad) was a lot for me. I’d rather let others take the lead with risdiplam.

      However, I spoke with my neurologist at length yesterday, and now I’m torn. He explained how the drugs vary in that one goes into the spinal cord and another into the bloodstream. This I knew. But going into the bloodstream could create potential benefits that Spinraza may not have. This is what struck me.

      I have a few months to think about it, but I have a feeling this is going to monopolize my brain in the interim. I obviously want to do what’s best for my body, so I fear I’m going to make the wrong decision.

      No drug is perfect, that I know. It’s just a question of which drug would benefit me the most.

      Have you asked yourself this question? Do you have an idea of which direction you’re heading in?

    • #23766
      Losmi
      Participant

      our conscious mind is often not enough when we need to make important decisions. One way of listening to unconscious part of our being is paying attention to our dreams. When you go to bed you can pray to God, or Gods, or Universe, or simply make a strong decision that you will remember your dreams in the morning, and that you will try to find answers there. If it fails repeat, and than again…

      Either way I wish you all the luck in future treatmants!

    • #23767
      Robert Stump
      Participant

      This choice is crystal clear for me, Risdiplam.  I have purposely held off going down the Spinraza path (in hindsight, probably not the best idea) seeing Zolgensma so close to the horizon.  When that failed to be approved for adults, Risdiplam was then just over the horizon, so here I am waiting years and years for that horizon to finally arrive.  What a terrible day it will be if it isn’t approved for adults either and I will have wasted all of this time and strength for nothing…

    • #23792
      Lupa F
      Participant

      I know insurance would never pay for it, but I wish I could use both for a bit to see what would happen. They’re already trying higher doses of Spinraza and this would sort of be the same thing.

    • #23793
      Alyssa Silva
      Keymaster

      Losmi, thank you for the advice. I appreciate it as this certainly isn’t an easy decision to make.

      Robert, waiting is the hardest. Thank you for sharing your feelings. Hopefully, it is approved for adults as well— either way, wishing you all the best.

      Lupa, I was actually thinking the same thing about taking both Spinraza and risdiplam. Wouldn’t that be nice? Perhaps other drugs in the pipeline will someday act as a middle ground for these two treatments.

    • #23799
      Halsey Blocher
      Participant

      Since I don’t take Spinraza, it’s an easy decision for me. I intend to start taking Risdiplam as soon as possible. But I can see why this poses a dilemma for you. What you’re doing works for you, but it’s hard not to wonder if something else might be better. It certainly wouldn’t hurt to wait and see how effective Risdiplam is for other adults – particularly ones who switch from Spinraza. Whatever you decide, I’m confident you’ll make the right choice for you.

    • #23805
      Alyssa Silva
      Keymaster

      Thanks Halsey 🙂 that’s so sweet of you to say.

    • #23810
      DeAnn R
      Keymaster

      First I want to say I respect everyone’s decision regardless what treatment they choose or if they choose no treatment.  It’s a personal decision.  When I pursued Spinraza I looked at it as biding my time until something better came along.  Although I haven’t had major gains I feel it has helped me maintain.  Luckily I’ve had no negative side effects, so I’m not in a rush to switch, but I do think I will try to get on risdiplam.  The injection day process is taxing.  Also with a daily med I’m thinking the Spinraza slump wouldn’t be an issue.  I would like all those who couldn’t access Spinraza to get risdiplam, so I don’t think I’ll rush right in to get it.  Crazy we’ll have choices right?

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