• No Change is a Good Thing

    Posted by deann-r on November 30, 2021 at 2:02 pm

    Today I’m recouping from my annual neurology visit and assessments. Even though it doesn’t seem like it should be that taxing, it takes a lot out of me. The two hour travel time each way is the worst. Going forward I’m glad it’s only once a year. Last year I got away with a tele-visit, but this year my neurologist wanted updated pft’s. That means in person it is. Leaving at 9 a.m. we arrive back home at 5 p.m. just in time to give Horton his supper.

    I’m still not quite sure what the purpose of a neurologist is except to prescribe treatments. In fact I hadn’t seen one in years until Spinraza came about. I did get to show off my robotic arm, so there was that. Our main discussion yesterday though revolved around continuing treatment. Although I like Spinraza better I don’t feel the difference is enough to warrant switching back. Now that my stomach issues are being managed for the most part continuing risdiplam/Evrysdi makes sense. I feel the main difference is Evrysdi provides consistency. While Spinraza gave me more of a noticeable boost it isn’t maintained consistently.

    My suspicion confirmed with the pulmonary function tests and physical therapy assessment, not much has changed in the last couple of years. Of course I’d love to see leaps and bounds improvements, but that’s not how SMA works. Maintaining where I’m at is a win in my book. Who knows what next year will bring. Folded paper watch out.

    Do you find neurology appointments beneficial? Where are you in your treatment journey? Do you prefer one or the other? I’m curious about Zolgensma too. Obviously it’s not currently an option for me, but I’m wondering if parents have been happy with that treatment option.

    joane replied 2 years, 4 months ago 5 Members · 9 Replies
  • 9 Replies
  • delphine-andrews

    November 30, 2021 at 2:36 pm

    I have been on Risdiplam for about 6 months now. I didn’t really have any of the side effects with it but I feel like I might be getting slightly weaker. I have also been having hand spasms. I am going in for an assessment in January to hopefully see. I don’t feel like I had this kind of issue with Spinraza. The doctors also say it could take up to a year to see how it is doing. I don’t know if I will switch back or not. I am also concerned about insurance covering it.

    • deann-r

      December 1, 2021 at 9:09 am

      Sorry to hear that you feel slightly weaker Delphine. It’ll be interesting what the assessment shows. For me I didn’t get the boost like I had with Spinraza, but since I’m maintaining that’s a good thing. Everyone’s different so it’s good to hear how it’s going with others. The hand spasm thing is interesting. Mine does it in ot when I’m working them harder. He tells me it’s my muscles firing but I don’t know.

  • Deleted User

    Deleted User
    November 30, 2021 at 3:32 pm

    I could not agree with you more. For an adult of my age (82) holding my own, without any improvement, is a result I spent most of my life praying that I would live long enough to see.  Like DeAnn, I started with Spinraza as soon as it became available to me, but immediately after Evrysdi was available, I switched to it because of the simplicity of taking a drug at the same time every day in the comfort of my home. While it is very difficult to measure a negative, I think I am largely holding my own, or likely losing some capabilities more slowly than would be the case without the Evrysdi. By and large I have had no side effects from Evrysdi. And to the main point, I see absolutely no reason to see a neurologist to “treat” my SMA because there is nothing he can do for me that my friendly PCP cannot also do, including writing prescriptions for Medicare coverage of DME, and will do with a simple phone call request. I have not seen my neurologist in several years as he is now willing to renew my Evrysdi prescription without a visit. We did have one virtual visit just prior to a prescription renewal, which served no purpose whatsoever, except to create a Medicare billable event.

    • deann-r

      December 1, 2021 at 9:13 am

      Thanks for sharing. Sounds like we have similar views where doctors are concerned.

  • lupa-f

    December 2, 2021 at 10:33 am

    It’s funny you guys see no need for a neurologist. I’m exactly the opposite. My main doctors over the years have only been neurologists. I only got a pPCP because Medicare wants it and I also needed a local person to sign paperwork. My PCP has no clue what SMA even is and lets me tell him whatever I need. I also have no other issues than SMA so it never occurred to me to not go to doctors that specialize in it.

    I just had my 14th Spinraza injection 2 weeks ago and so far I seem to be holding steady at a level a little bit above where I was when I started it.

    • deann-r

      December 3, 2021 at 5:03 pm

      That’s why I asked Lupa. Figured maybe someone finds neurologists beneficial. I can see where a doctor familiar with SMA could be helpful.

      Thanks for the Spinraza update too!

  • joane

    December 2, 2021 at 1:38 pm

    Good afternoon every one,  I had been on spinraza for a couple of years and felt good and even a little stronger!  I then switched to evrysdi since it sounded great, so easy compared to the spinraza procedure….I now feel much weaker and may go back on spinraza, not sure and very confusing.  I also wonder if I went back to spinraza if I would gain back what I lost!

    I am 64

    • deann-r

      December 3, 2021 at 5:08 pm

      Thanks for sharing. It’s definitely a tough decision. I wish you the best whatever you decide. If you do switch back I’d love to hear how the process went.

      • joane

        December 5, 2021 at 9:24 am

        Thank you DeAnn…  I will definitely let you know what I decide..  I have a virtual appointment with my neurologist the first week of January..


        Stockton NJ


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