• Posted by alyssa-silva on June 6, 2022 at 2:16 pm

    Hey all. I thought I’d start a thread to hear about everyone’s treatment updates so that we can learn more about everyone’s experiences thus far. Where are you in your treatment journey? Are you still hoping to get treatment? Have you been receiving treatment for a while? Switching treatments? I know a lot of people come to these forums to learn more about first-hand treatment experiences, so your input is so valuable. I’ll leave mine in the comments.

    alyssa-silva replied 1 year ago 6 Members · 13 Replies
  • 13 Replies
  • alyssa-silva

    Member
    June 6, 2022 at 2:26 pm

    I have had 20 doses of Spinraza thus far. The past few doses haven’t felt as effective for some reason and I’ve heard that from other people in the community as well. That being said, Evrysdi is always in the back of my mind. I’ve recently had more trouble swallowing than normal, and I’ve been told Evrysdi helps with those muscles more. Although I’m not sure how factual that is. Curious to hear about your experiences.

  • deann-r

    Member
    June 8, 2022 at 10:10 pm

    I’ve been on Evrysdi for about a year and a half after switching from Spinraza.  Personally I felt better on Spinraza but the difference isn’t enough to warrant switching back.  I haven’t really noticed any significant gains in any areas.  No significant losses either, so that’s a win in my book.  My GI issues are being managed with Imodium.  That’s pretty much it.  No wow factor for me, but I’m grateful to have the opportunity to take the medication.

  • alyssa-silva

    Member
    June 12, 2022 at 12:37 pm

    I know you said you haven’t noticed any significant gains but have you noticed a difference in swallowing? That’s good to hear you were able to fix your GI issues. That’s another reason holding me back from switching.

    • deann-r

      Member
      June 14, 2022 at 8:48 am

      Again, I haven’t really noticed any significant changes. That bodes for swallowing as well. My neurologist suggested a swallow study to see, but I don’t feel like I would pass anyway so I’d rather not hassle with it.

  • diana-a

    Member
    June 15, 2022 at 7:50 am

    I’ll be receiving my 18th dose of Spinraza 7/1.  Spinraza has been effective for me.  I wish that they would increase the dose for adults.  Prior to every dose, I start feeling weak and need my “juice”.  Once every 4 months is easier for me and my schedule than dealing with my treatment daily.  Fortunately I don’t experience any side effects with Spinraza.  I’ve tried to sign up for the increased dose of Spinraza (Devote) clinical trial in Dallas but the spots were filled.  Hopefully they’ll have data from the clinical trial soon and the FDA will approve higher doses for adults.

    • alyssa-silva

      Member
      June 15, 2022 at 10:37 am

      I get the same feeling Diana. I call it the Spinraza slump. I’m going for my next dose a week from today and I barely have the energy to respond to you right now. Hopefully that larger dose comes sooner rather than later.

  • tammy

    Member
    February 1, 2023 at 2:00 pm

    Can anyone here give me advice or tell me how the process goes if you are on 1 medication and looking into trying a different one? I’m currently on Evrysdi and have noticed no difference in the way I felt before taking it. Definitely no gains either. I’m in the process of slowly getting the ball rolling to try spinraza. The only annoying part is that my current neurologist does not administer this medication so I would have to go to an entirely different neurologist and it’s not in the most convenient location. Or should I say… it’s in a very expensive location because I would have to pay $11 for the George Washington Bridge fee and another $20 to $30 for parking just for the appointments. But anyway that’s not even my concern at the moment. I was wondering how it works with insurance to switch between the two. Is it a hassle? Has anyone here gone from Evrysdi to spinraza? And if you didn’t like one versus the other have you gone from one to the other, and then back to the initial one again? I’m just trying to figure out how difficult it’s going to be and I also don’t want to take the risk of having long gaps in between treatment and have no medication to take whatsoever. Have no idea how this works I’m a total newbie at this stuff LOL any advice would be greatly appreciated

  • tammy

    Member
    February 1, 2023 at 9:52 pm

    Sorry! Feel free to delete my above reply. I meant to post it as a new topic so that more people would see it. But I accidentally posted it as a reply. So I posted it again as a separate topic

  • lindsay-russell

    Member
    February 3, 2023 at 12:43 pm

    December 14th, 2022 made my 20th dose of Spinraza. August 2023 will make 6 years that I have been on treatment. Up until December, I have been getting my treatments cervically, but I now have a new radiologist who will only do it in the back. This past injection was challenging since I have rods in my back. I also had a lumber puncture headache for 6 days after my injection, which was horrible. I am sticking with Spinraza though because I have been told that within a year they are going to increase the medication to 50 mg. For about 3 years now, I have been dealing with my left arm being almost completely straight which Spinraza has caused. Because of this, I can barely use my left arm which has been mentally and physically challenging. My contractures are releasing in my arms and legs, mostly my arms, which I have been told Spinraza is not supposed to do that. Although I view this as a negative, Spinraza has given me big gains and has helped overall. I had thought about switching to Evrysdi a couple of times but after doing more research on it I decided not to.

    • alyssa-silva

      Member
      February 3, 2023 at 1:45 pm

      I’m so glad to hear about your progress, Lindsay. I, too, have gone back and forth with Spinraza and Evrysdi. But right now Spinraza is working out well for me, so why change a good thing you know? I’ve lost track of how many doses I’ve had, but I’ve been going since December 2016.

  • dennis-turner

    Member
    February 4, 2023 at 2:12 pm

    Lindsay, I hope you are correct about the dosage increase. That slump is no joke.

    It seems ridiculous that a 2 year old and an overweight old guy get the same dosage. Getting back from the slump is also taking longer now. It was almost two weeks before I noticed the surge this time.

    • lindsay-russell

      Member
      February 4, 2023 at 2:32 pm

      Yes it’s true. My family access manager told me this in December. They have been doing clinical trials for 50 mg for two years. My family access manager also told me that she heard in 2025 or 2026 our dosage could be 100 mg once a year. The 50 mg dosage would only be twice a year. I’ve never experienced the slump you’re talking about but I’ve had some injections where it didn’t really do anything.

    • alyssa-silva

      Member
      February 6, 2023 at 8:14 pm

      I hope you’re correct too Lindsay, but if your FAM said it then it must be true. Hallelujah. I’ve been trying to get on a study for a larger Spinraza dose but haven’t met the criteria yet. I’m deep in the Spinraza slump right now and can’t afford to get this weak. Ugh.

Log in to reply.