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    • #29250
      Alyssa Silva
      Keymaster

      I’ve had 19 doses of Spinraza and have a pretty good gauge on how it affects my body. For me, I start to notice its effects (more stamina, better respiratory function) right around the 2-week mark. From there, things ramp up and I feel stronger until week 8. I plateau for weeks 8-9. Then by week 10, my stamina plummets and I’m in need of my next dose long before my next shot.

      I hear many people wish the doses weren’t so spread out which is why they’re testing higher doses right now. But, I’m curious: what’s your Spinraza cycle like?

    • #29255
      Andrew
      Participant

      For me when I was on Spinraza I always felt a boost in stamina/energy almost immediately after the LP and for the first few days even though there was a recovery period for my lower back that ranged from a few days to a few weeks I always felt the effects of the medicine the most in the first few days. I feel like it still worked pretty well for me the first few weeks but it felt like a slow decline and around the 45-60day periods most of the effects always felt very noticeably diminished. And then waiting until the next LP the last few months was always a struggle.

      I used to be on Spinraza for I think ~ 3years before I switched to Evrysdi (Risdiplam) around March of last year. I’ve personally been a big fan of Evrysdi since I’ve experience many similar benefits from both medications with some more additional noticeable benefits for swallowing both solids/liquids from Evrysdi. The daily consistency on Evrysdi has felt really nice. And I also haven’t had any downsides on Evrysdi (I see a lot of people experience some GI issues but I didn’t get any from Evrysdi – I have a lot of GI and motility issues normally and Evrysdi didn’t aggravate them for me, if anything they maybe feel slightly better on Evrysdi).

      That’s been my short story of the medications I’ve been on. Let me know if I can provide any more info on anything relating to them. I sort of sidetracked into my Evrysdi experience even though the post asks about Spinraza x.x – but I figured it wouldn’t hurt to include.

       

      • #29260
        Alyssa Silva
        Keymaster

        Thank you for sharing all this information with us! Interesting to hear that Evrysdi hasn’t affected your GI system. I have a long list of GI and motility issues and this has been my main reason for not switching over. Glad to hear it hasn’t affected you.

    • #29256
      Dennis Turner
      Participant

      <p style=”text-align: left;”>Usually I have a similar cycle to yours Alyssa. This latest time however, I never felt the boost, just a slow stop in slump. I have a scheduled appointment in a few weeks and plan to discuss options with my Neuro</p>
      I’m really not interested in switching to Eversdy,  Spinraza has generally been good for me. I think the dose might need to be higher or/and the frequency increased.

      Just my thoughts though.

      • #29261
        Alyssa Silva
        Keymaster

        My second-to-last dose I didn’t feel much of a difference either. Just got #19 three weeks ago so I’m curious to see what happens. Please keep us posted with your journey.

    • #29262
      Diana A.
      Participant

      I had my 17th dose two weeks ago.  I’m very much an advocate for Spinraza. My strength skyrocketed when I started my loading doses.  Over the years, my strength has weakened some (probably due to age). I’m 60 years old and feel the slump before every maintenance dose.  I wish that Biogen would increase the dose for adults.  I’ve never understood why we get the same amount of Spinraza as infants and children.  I also look forward to the day when gene therapy is also an option to be used in conjunction with Spinraza.  Fortunately I don’t have any side effects with Spinraza.  I try to exercise daily to get every benefit I can from Spinraza but some days it’s hard to get motivated. lol  I’ve looked into all the clinical trials but my age disqualifies me for the ones that I’m interested in.  It’s hard to be patient and wait for the increased dose to get approved.  We just have to wait I guess…

    • #29278
      Dennis Turner
      Participant

      Diana,  I understand being older, I will turn 63 soon. I am taking part in a couple trials,  but I figure that is really to help others down the road.

      My hope is that they will increase the dosage soon.

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