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Thoughts about Relyvrio
What is everyone’s thought on the news about Relyvrio? Do you think it has helped you?
I must say I just started taking it Jan of this year. The taste is terrible and nothing really helps it. I just drink it as fast as i can. I think it’s caused me a great deal of abdomen pain and diarrhea. Both are still continuing to this day.
I know if the FDA pulls their approval, there will be a lot of sad people. We are so limited with approved drugs that losing one is a huge blow. I’m expecting that my insurance company will send a notice of “denied coverage” soon.
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9 Replies
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I recently went to Houston Methodist Neurology and was advised to keep taking but once per day rather than twice due to stomach upset.
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I was diagnosed in October of 2022 and started Riluzol immediately. By December I was also taking Radacava. Both had been easy to administer and didn’t cause any issues for me. By March of 2023, I started taking Relyvrio. I have bulbar onset ALS so I was already having trouble swallowing. It took me an hour to drink 8 ounces and I hated every minute of it. Worst tasting stuff I ever had. But considering that I was mobile and could still do things, I considered it to be a huge waste of my very limited time. I couldn’t imagine losing two hours a day to this torture! At the first hint of stomach issues, before starting the twice a day dose, I stopped! I felt that trading two hours a day of my life wasn’t worth the possibility of gaining a month or two later on when my movement would be severely limited anyway!
Right or wrong, this was the best decision for me, so I am pleased to hear that it seems to not really slow the disease down significantly.
Janet Neckyfarow
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Janet-Neckyfarow,
I get your logic and I agree! I often struggle with the idea of extending life for a couple of month with a poor quality of life. Each person’s situation is unique and I understand we have different needs.
My father was the same way and he declined any treatments. He actually declined getting an official diagnosis (you would have to know my dad to get the whole picture). He helped take care of my grandfather, two aunts, and many other family members who passed from ALS. I understood and respected his decisions.
For me, my focus is on my quality of life and my mental health. Each person should make their decisions based on their own beliefs and goals. I appreciate you openly sharing your thoughts. Keep being you and sharing!! It is enlightening!
Amanda
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I am currently taking Relyvrio once daily and have been since June 2023. I’ve learned to manage the taste by taking very early in the morning with my Riluzole & other supplements.
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I dropped Relyvrio about a week ago, right after they failed the 3rd trial. It was causing me gastric problems such as upset stomach, heartburn and every 3 or days an episode of explosive diarrhea. I could never go out in public and stayed near a toilet at home. I feel incredibly better. A;so I dropped Rilutek about the same time. I developed a chronic cough that persisted for several weeks. I thought it was a consequence of ALS. Three days later my coughing reduced like 90%. I still cough some during swallowing-eating. I attribute that to my Bulbar.
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My wife was diagnosed with ALS in 2020 and started on the Sodium Phenylbuterate and Tudca right away. At that time I was buying the Tudca online and prescribed SP powder, this was mostly out of pocket at about $7,000/month. Last year when the FDA approved Relyvrio we were able to get insurance to pay for most of it. It was disappointing to hear that the trial failed and it’s possible that this will be pulled from the market, I will say my wife felt more improvement with the Sodium Phenylbuterate powder and Tudca pills than the Relyvrio formulation. Not sure what they did when they created the Relyvrio formulation but I think they should consider this when they do the study.
BTW, I “melt” the Relyvrio in a small amount of warm water and then add some ice tea into the cup, she takes this in one big gulp, chases with a bite of a pastry and a cup of coffee. This is her regular routine and seems to help her tolerate the horrible taste.
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I was in the Phase 2 trial and became incontinent after 2 months of taking the drug. At the end of the trial I took the drug for another month but it felt like my progression was speeding up so stopped January 2023. A month after stopping I was no longer incontinent, which is still of case today. One less thing to worry about.
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I saw my doctor Thursday and he suggested I stopped taking Relyvrio because it did not demonstrate effectiveness. I had only been taking it for a little over a month.
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My brother discontinued Relyvrio and Radicava in January after being on each for six months. He felt the benefits, if he experienced any, were not worth the side effects including several emergency room visits for severe constipation.
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