• ALS drugs

    Posted by Randall on February 1, 2024 at 8:43 pm

    I am taking Riluzole Tabs, Relyvrio, and a clinical trial drug. A friend asked me if the drugs are working. Is it possible to really know if the drugs are working?

    Dagmar replied 1 week, 1 day ago 9 Members · 9 Replies
  • 9 Replies
  • Emee

    February 7, 2024 at 7:40 am

    I’m taking Riluzole and Radicava ORS, soon I’ll be adding Relyvrio. My symptoms continue to advance at a steady pace, I’ve had ALS for almost 2 years. I haven’t been able to tell how effective the drugs are, that’s why I’m adding Relyvrio to try and help slow progression down. According to my doctor, the drugs are probably slowing progression. I am assuming that my expectations for the drugs are exceeding reality since ALS has so many different forms and progression is different from person to person. Bottom-line, I’ve stopped trying to assess whether they are slowing, and just accept that they do help.

    • Naomi

      February 7, 2024 at 5:57 pm

      My husband is supposed to start the oral radicava, he is apprehensive, looking to see if anyone is having good luck with slowing things down. He is takes the Riluzole, please let us know how the new drug works for you.

      He says how do yo knw if it is slowing down the progression or not. I guess it is a fair question, since this seems to be moving fast

      • gideon

        February 8, 2024 at 4:03 pm

        Dear Naomi

        The most effective way is to start Radicava in very early off

    • Dagmar

      February 12, 2024 at 11:10 am

      Emee, may I ask what else are you doing to help slow down your symptoms , besides taking the medication?

  • lee

    February 8, 2024 at 5:19 pm

    I am taking Radicava ORS (and the IV version before that), Riluzole, and Relyvrio, and my progression has been “slower than expected.” However, if the only information we have is the rate of progression, there is absolutely no way to know if any medication is doing any given individual any good. If we could look at what is going on in individual cells, then perhaps we could know, but we do not have that information now. All we know at present about any of these medications is that they have some effect on the average rate of progression. I am not an expert in ALS, but I am a statistician and scientist with a Ph.D. from Harvard. My strong recommendation is to take the available medications unless there are side effects or something similar that outweigh the possible benefits.

  • utahna

    February 8, 2024 at 6:39 pm

    I’ve been taking riluzole since I was diagnosed. And I have been told I have slow progressing ALS. I started with relyvrio and had some weird side effects so I quit taking it I have not tried the radicava stuff.

  • sandyrob

    February 8, 2024 at 6:57 pm

    We were told that since everyone’s progression is individual, it’s nearly impossible to tell if any of the meds help. My husband had an aggressive type. He passed away 18 months after his first symptom. He did the 3 R’s. It took 9 months for him to be diagnosed. We will never know if he had been able to start sooner, if it would’ve made a difference.

  • monka

    February 11, 2024 at 10:28 am

    I have been taking Riluzole since 2019, Radicava by IV since 2020 switched over to the oral form when it came available and have taken Relyvrio for over a year. Have they helped its hard to say since there isn’t a specific pattern of progression. I will say that I think in my case they’ve done something. I can still walk with a rollator and do some tasks on my own. I have still had progression but after 5 years diagnosed and 8 years of symptoms its been pretty slow.

  • Dagmar

    February 12, 2024 at 11:18 am

    I have been taking Riluzole for the -past 14 years. When I was diagnosed in 2010, that was the only medication available. Years later, by the time the other “Rs” were approved, I had established my daily routine of Riluzole, exercise, and other lifestyle changes that have been shown to slow progression, I didn’t want to upset my pattern – – and risk possible side effects. Which one has slowed down my ALS? I don’t think there’s one easy, magic bullet. But the combination is working in my favor.

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