• Prabhuraj Gaddikeri

    June 10, 2023 at 11:29 am

    I am surgeon profession diagnosed MND on 16/12/2022. Interested in enrolling to new trials can you help me

  • Jim Conner

    June 15, 2023 at 2:13 pm

    I started taking it Three weeks ago and I’m starting two a day today. The only problem I’ve had is shortness of breath which is due to the allergy part. We may stop for a week and see if my shortness of breath goes away if it doesn’t than it is due to the progression of the disease. We got financial assistance on payment of the medication that was $1090 a month. We would not use it if it wasn’t for that financial help


    July 6, 2023 at 3:05 pm

    I started taking Relyvrio  March 2023 and stopped taking it June 2023. The side effects we’re just too much for a quality of life experience. The horrid taste was the least of my worries. I had constant diarrhea. I was peeing twice as much as before. It affected my sleep. I always felt awful and exhausted. My skin on my arms and legs became scaly and cracked. I was always thirsty no matter how much I drank water. My blood pressure went from 140/80 to 150/100. That might explain the headaches I would get.

    I have slow progression. I was diagnosed February 2023. My first noticeable symptom was February 2022. During that time I went from a 48 to a 42. Since taking the medication I’m averaging a loss of one point every two months. My rate of progression has remained unchanged.

    Since stopping the medication, I feel so much better. I have more energy, I sleep better, my blood pressure returned to normal, and I am much happier. For the amount of cost of the medication it is not worth it in my opinion.

  • Leslie Das

    July 6, 2023 at 10:04 pm

    My husband pAls started the Reylivrio 4/21/23 once per day then moved to 3x per day after 3 weeks. On 4/29/23 he started having very frequent and loose bm. I spoke to Optum Frontier and they had some suggestions: Pepto Bismal or a probiotic with my. 10000 cfu or cutting back to once per day.

    Then I spoke to his ALS doc and she asked us to stop it come tell for a week or so, then message her for next steps. It was pretty evident right away that the very loose (though not diarrhea) bm reduced quite a bit to a manageable extent.  I think it is probably the Reylivrio that is the culprit, bit I will message the doc and see what she wants us to do.

    My pALS also has FTD (frontotemporal dementia) so it’s possible that his complete bm and bladder incontinence is partially to blame.

    Best wishes. Leslie

  • Reese

    July 10, 2023 at 2:50 pm

    If you have Netflix, suggest watching season 1 episode 4 of Suits.   They twisted the name Amylyx around but it’s close in spelling, can’t believe they got away with this.  There’s humor, and it’s fictional, but this episode is clearly about the new Relyvrio.

  • Lyle Davis

    July 11, 2023 at 4:38 pm

    I stopped AMX0035 / Relyvrio due to gastric discomfort, and it also gave me fatigue. I was actually taking it as AMX0035 provided by my ALS clinic, and I had already received a couple months worth of Relyvrio (same exact product, as we know, just named and branded differently). So, I would like to find a way to donate all my unused/unopened packets to someone who can put it all to good use, as I can’t return that to the clinic since they would just have to dispose of it.  I’m in Fort Lauderdale.

  • John Miklosh

    July 17, 2023 at 7:50 pm

    I took it for about a month. The taste is absolutely horrible, hands down the most vile tasting medicine I have ever had the displeasure of taking. Due to the overwhelming amount of sodium in the medicine, my feet and legs were swelling up making it difficult to walk with my crutches. I decided to quit taking it, the side effects just weren’t worth it for me. It would sure be nice if they could cut down on the 3500mg of sodium and maybe out it in a pill form or flavor it with something. I admire you folks that can suck down 3 of those packets a day, wow, lol.

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