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    • #17024
      Dagmar Munn
      Keymaster

      Many members of this forum are tracking the progress of AMX0035 as it makes its way through the drug approval system. News and announcements are coming in from many sources. Let’s use this “topic discussion thread” to collect news on this proposed new ALS treatment, your questions about it, and any other thoughts related to AMX0035.

    • #17026
      Dagmar Munn
      Keymaster
    • #17029
      Kathy stitz
      Participant

      When will AMX0035 be available to ALS patients?

    • #17036
      Duane
      Participant

      Here is a link to a very meaningful article about AMX0035, including some of the history behind it.  I know one of these compounds has been used in Traditional Chinese Medicine for centuries.

      https://www.alzforum.org/therapeutics/amx0035

       

    • #17071
      Jens Buss
      Participant

      Hello everybody

      amx 0035 is availabel allready … you just have to buy TUDCA and you need a doctor for presciption of

      Ammonaps which is the trading name for Natriumphenylbutyrate.

      I am doing exactly this medication since about 4 weeks now and I still feel good, no perceptible change in progress of the disease and no side effects.

    • #17072
      Jim
      Participant

      Hi, I’m new to the forum, but have been reading a few articles from the forum over the last month, very informative! I’ve had ALS for two years now, it’s been difficult for all of us! I’m glad I can still walk abit (with walker) and have the use of my arms and using noninvasive ventilation at night now. Staying positive and not stressing out is so important! I wanna get to the point/topic. The past 2 months I’ve been taking an array of supplements, TransResveratrol, Curcumin, Glutathione and Co-Q10 etc. During my research/reading I came across some information about Amx0035 (Sodium Phenylbutyrate) and Tudca (Tauroursodeoxycholic acid). Tudca is inexpensive and overall easy to obtain, but the Sodium Phenylbutyrate is very expensive (1,000-5,000usd). I read an article which claims there is a possible substitute for Sodium Phenylbutyrate. I will put a link below! The article/study says Sodium Benzoate (inexpensive/10.00usd and easily found) can be a substitute or can be mixed with Sodium Phenylbutyrate of course lowering costs. If this is true, more people should know about it and of course I could be wrong or my theory is wrong, but wanted others to look into it. Please read the article and look into the two drugs used in Amx0035. Do you think Sodium Benzoate can replace Sodium Phenylbutyrate effectively? Wanted everyone to be aware of above info and please research it! Opinions are welcomed.. Wishing everyone all the best and stay strong!

    • #17073
      Jim
      Participant

      https://grantome.com/grant/NIH/R03-HD078447-01                                                                     Above is the link to a Study with Sodium Phenylbutyrate (used in Amx0035) and Sodium Benzoate. The results of the study are on the page toward the bottom, click. If the link doesn’t work, I’ll repost it! Keep in mind, many of these drugs are recycled and can treat several medical issues, as the above study dealt with hyperammonemia. Best Regards, Jim

      • #18462
        Isabelle
        Participant

        It says “Conclusion: Phenylbutyrate was more effective than benzoate at disposing of nitrogen. Increasing phenylbutyrate dose may not result in higher nitrogen excretion due to decreased conjugation efficiency at higher doses. Combinatorial therapy with phenylbutyrate and benzoate has the potential to significantly decrease treatment cost without compromising the nitrogen disposal efficacy”…I guess that is why we stay with SPB as a preferred choice …. the “may” has not been investigated nor tried as far as I saw …sadly !… I am wondering if TUDCA by itself is not as efficient as combined with SPB at slowing down the ALS symptoms progression…I am reluctant to take that SPB which was said to be neurotoxic …. any thoughts on this?

         

    • #18469
      Jim
      Participant

      If there is any article/trial which states Sodium Benzoate can be neurotoxic, I’d definitely stay away from Sodium Benzoate! Looks like Tudca and many other supplements have shown ‘Promise with slowing progression! Best stick with the supplements that have some solid foundation within trials and light exercise (my opinion)! Thank you Isabella for your input! All the Best!

    • #18500
      Suzanne Gallo
      Participant

      My PALS neurologist at Penn ALS clinic gave him a script for Sodium Phenylbutyrate. It was over $1000 copay to fill at Walgreens. He has Medicare and AARP UH supplemental and AARP UH pharmacy benefits. I was advised to appeal our insurers decision not to cover Sodium Phenylbutyrate. Ask for a second opinion on the denial from a neurologist- making sure that neurologist knows how close AMX0035 is to being approved by the FDA……

      anyone have any luck appealing coverage of sodium phenylbutyrate?? We could sell our house, but, idk- where would we go?

    • #18522

      I think it’s interesting to note that two letters were sent to the NEJM after the AMX0035 results were published.
      https://www.nejm.org/doi/10.1056/NEJMc2030710

      The authors of the second letter to NEMJ affirm that only TUDCA is effective and therefore that the dual therapy proposed by Amylyx has little interest. The principal investigators’ response is that these are studies with different methodologies and therefore no conclusions can be drawn.

    • #18891
      Dagmar Munn
      Keymaster

      Webinar: An Update on the CENTAUR Trial: a Trial of AMX0035 in ALS

      Monday, May 17, 2021
      2:00 – 3:00 PM EDT
      To register: https://register.gotowebinar.com/register/7277752541137339663

      Presenters:
      Sabrina Paganoni, MD, PhD, Sean M. Healey & AMG Center for ALS at Mass General Hospital.
      Merit Cudkowicz, MD, MSc, Sean M. Healey & AMG Center for ALS at Mass General Hospital,
      Please these two presenters for a conversation about the results of this trial and the next steps for AMX0035.

    • #20244
      Tomasz Boski
      Participant

      hmmm, I am on TUDCA for 3 years……..not so many benefits

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