ALS drugs

[Emee]

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]

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]

Dear Naomi

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

[Dagmar]

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

[Nettie]

I was diagnosed in September 2022 with symptoms starting at least a year before that. I was immediately put on Rizulole. I tried Relyvrio but after 3 doses I had live threatening reactions. I decided to only take Rizulole. My progression has been slower than most. I do not know if the medication is slowing the progression or if it is just being a different case. I can still walk some, but my left hand does not work, but it shakes a lot. I can still move my left arm. It has now progressed in my right hand and arm and my speech and I need assistance dressing and showering. Since there is so many unknown with ALS it will probably never be known. I am praying for a cure and peace knowing God’s got me and I could be the first survivor of this horrible disease.

[Lee]

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]

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.

[Sandy]

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]

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]

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.

[Paula Patriarca]

Dagmar,

Could you please share what lifestyle changes and exercises you use effectively to slow down progression along with the Riluzole. My husband and I have been following you since he was diagnosed but it would be help if you could share what you find most effective. Thank you

[Gideon]

<b elementtiming=”ar-headline”>FDA-approved ALS drug Relyvrio could be pulled from market after failing clinical trial

Adrianna Rodriguez

USA TODAY

usatoday.com

USA TODAY

USA TODAY

[Buzz]

I have stopped taking Relivrio this week with this news and advise from my doctor. I’m now only taking Riluzol, which I’ve been taking since my diagnosis in September.