• Approved for Evrysdi

    Posted by anna on April 10, 2023 at 2:54 pm

    I was finally approved for Evrysdi! The stupid age limit that had been imposed for the past year in Greece, preventing access to treatment for patients over 25, is finally removed. Of course it’s great news and I’m grateful, but my anxiety is running rampant! I don’t know how my body will react to it as I’ve never taken any form of medication other than antibiotics and plain painkillers. Out of all the possible side effects (GI issues, headaches, restlessness), it’s diarrhea I’m mostly worried about for reasons you’re all familiar with: I don’t have the privilege of going to the toilet whenever I please, even that has to be scheduled when you have SMA.

    How have you dealt with these issues? Anything else I need to be prepared for?

    tammy replied 10 months, 1 week ago 5 Members · 15 Replies
  • 15 Replies
  • deann-r

    Member
    April 10, 2023 at 9:17 pm

    Congratulations! Sometimes the anticipation can be overwhelming while actually being on the med can be underwhelming. Not saying it’s not great but the bundle of emotions is a rollercoaster. Or was for me. I don’t think GI issues are a given, it’s just that you hear about it. When folks don’t have those issues you don’t hear about it. Unfortunately, I’m on an Imodium regimen to combat those issues for me. It began about a month after I started the med. Not gonna lie, it was a struggle for a while, but managed for the most part now.

    Try not to stress too much about it. Like everything you have to figure out what works for you. Good luck! We’d love if you’d keep us posted. Do you know when you’ll be starting?

    • anna

      Member
      April 11, 2023 at 4:04 am

      Thank you for the honesty… I think! 🙂 Seriously it’s comforting to know that at least it can be managed. Have you tried to reduce the dose or frequency of Imodium in case your body has adapted and you don’t need it as much anymore?

      I don’t know when I’ll be starting yet, I was told to wait for further details. Will keep you posted!

      • deann-r

        Member
        April 13, 2023 at 9:34 am

        A couple times I’ve forgotten the Imodium and it dawned on me later why my stomach was protesting. I have heard of other folks having better luck with their bodies adjusting though. Now Imodium is just part of my routine. It took a while to figure out what timing and the smallest dose to be effective for me.

      • anna

        Member
        April 14, 2023 at 4:42 am

        If it’s become part of your routine and doesn’t cause any other issues, it’s fine I guess. That’s what medications are for!

  • alyssa-silva

    Member
    April 10, 2023 at 10:01 pm

    Congratulations Anna!! That’s awesome news. 🙂 I’ve never taken Evrysdi so, unfortunately, I don’t have answers for you. Please keep us posted on your progress. Once the age limit was removed was it easy for you to access it? I can’t believe there was an age limit, to begin with. I’m sorry you had to deal with that.

    • anna

      Member
      April 11, 2023 at 4:06 am

      Thanks Alyssa! Yes, all I had to do was resubmit my application along with two X-rays of my spine proving I can’t receive Spinraza. In my case, it took about a month to hear back. I haven’t heard of any rejections so far and I don’t think I will because the cost is covered by public healthcare which means that private insurance approval is not required. Of course, I’ll be posting updates because what’s more interesting than the greek bureaucratic hassles?

  • susana-m

    Member
    April 13, 2023 at 4:15 pm

    Hi and congrats on getting Evrysdi! I didn’t realize there was an age limit, that’s nuts.

    I know the anxiety well. Starting with possible side effects to the question of how much hope is reasonable, what can you expect to improve.

    Historically, I’ve always had constipation but my body’s first defense is nausea. You never know with a new Rx so I planned on staying home with backup help. We left the transfer sling for my Hoyer lift under me as that would eliminate one time consuming step if there was a mad dash to the bathroom. It’s demoralizing when you don’t make it to the toilet in time.

    One day, two days, nothing dramatic.

    Had some nausea, tried taking the Rx at least 1/2 hour before food on an empty stomach and clear sailing from then. I’ve always been restless and prone to migraines, didn’t notice any significant changes there.

    What I haven’t seen is anyone talking about the emotional process. The overwhelming anticipation and underwhelming reality DeAnne mentioned.

    I was about 10-12 years old when I verbalized that I was not going to get better, that a “progressive neuromuscular disorder” only had one prognosis: slow decline without any real brakes. The sun rises in the east, the earth is round and SMA does not improve. Allowing yourself to hope for change means risking crushing disappointment. And then I peeled a tangerine, something I had not been able to do for 2 years. My doctors mentioned the volume of my voice had risen. These small changes mean the progression has paused and they’ve found ongoing improvements.

    What’s been most impactful for me has been focusing on what I can control. I’m very deliberate with my food choices, I meditate daily, and am engaged in projects. Keep in mind, these are strategies that have worked for me but your mileage may vary.

    The purpose of fear is to point out dangerous terrain, to keep you alive. You’re asking those who’ve gone before.

    We get it.
    We’ve lived it.
    We got your back.

    • anna

      Member
      April 14, 2023 at 4:41 am

      Thank you so much for your long supportive post Susana!

      I also have chronic constipation so, whenever something is wrong, food finds an easier way out through the mouth! It’s interesting that taking it on an empty stomach works better for you because it is advised to take it after a meal and preferably early in the day. My main meal is lunch, but I want to avoid taking it when I’m full, so I might try breakfast instead.

      I’ve set the bar very low, so I’m not in for a big disappointment. I know it doesn’t turn the clock back, so even slowing down the progression would be a huge win for me as long as it doesn’t cause any problems.

      I’ll take it step by step and get through it just like everyone else. Starting next week! I’ll be posting updates that might be of help to anyone else getting the treatment although you’re all veterans by now!

  • tammy

    Member
    April 17, 2023 at 9:36 pm

    Just to give you a different experience and positive vibes… I have been on the medication for almost 2 years now and I have had no GI issues and no diarrhea. So I hope that helps to ease your mind a bit 🙂

    • anna

      Member
      April 18, 2023 at 5:07 am

      Thanks a lot Tammy! It certainly is comforting to be reminded that every case is different. I hope the treatment is working for you!

      • tammy

        Member
        April 18, 2023 at 12:46 pm

        No problem! And yes, every person is definitely different. What I did when starting the medication just as a precaution in case.. I ate a bowl of plain unsweetened oatmeal right before taking it to kind of coat the stomach. And I did that for several months. Maybe it helped? Who knows but can’t hurt to try. Also I have not noticed any difference since taking the medication unfortunately, no improvements, but I guess it’s better to be on it than not be on it

      • anna

        Member
        April 20, 2023 at 2:26 pm

        So you take it after breakfast. They tell you to take it after a meal, but I’m not sure how big the meal should be. I mean does my morning yogurt even qualify as a meal? It’s trial and error I guess. I love oats though, so I’ll definitely try that! And yes, it’s better to be on it anyway and hope for the best. You never know how you’d be without it.

      • tammy

        Member
        April 20, 2023 at 4:55 pm

        I guess I’d say more like lunch or brunch LOL because I don’t eat breakfast. But it doesn’t matter what time you take it as long as you take it close to the same time every day. When they say after a meal, I don’t think it matters on the size of the meal. It’s not really that strict of a regimen. As long as you eat before you take it, you’re good

      • anna

        Member
        April 21, 2023 at 12:47 pm

        That would work for me because my meals are usually small and frequent. Thanks again!!

      • tammy

        Member
        April 23, 2023 at 5:56 pm

        No problem! Let us know how it goes

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