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What’s the latest news on AMX0035?
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I found the article you shared about FDA rushing approval of AMX0035 very interesting. I Read the comments that Bryan Trayor of NIH voted to approve and was interested in the company talking about removing from market is history does not support slowing down progression.
Dr Trayor and his team were interested in our family gene mutation and they are working with us collecting biopsy and blood from my children and siblings who tested positive for our family defective gene. I spent an entire day with him and was impressed with his confidence in future treatments to slow ALS. I am taking riluzole and Radicava ORS with no side effects, I have no hesitation adding AMX0035. All medications that have potential to slow progression are welcome.
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Bill,
Which genetic are you? I am C9orf72. My mother and cousin died of this disease. Time for us to eradicate it!
Jerry
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Hello Jerry, Our family has the CHCHD10 variant c.44G>T (p.Arg15Leu). We lost our mother and 4 of her brothers and sisters to ALS. I have 8 brothers and sisters some have tested for the defective gene and are positive including my son & daughter. I am the oldest at 65 and the only one currently with ALS degradation. Agree it is time to find a cure or slow down the progression for the next generation.
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Relyvrio (AMX0035) Approved in US for ALS Treatment
https://alsnewstoday.com/news/relyvrio-amx0035-approved-us-als-treatment/Looks like AMX0035 has been approved by the FDA.
What do you think of this news?
Is this a treatment you would want to try?-
Although it’s great to have another ALS treatment join Riluzole and Radicava… I agree with Carolyn that at the price of $158,000 per year, AMX0035 (oops, Relyvrio) is unbelievably expensive.
All three medications slow symptom progression – – so why not choose the cheapest one? Less hassle with insurance coverage and availability.
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I would try it if it were affordable. I highly doubt that it would be, just like how oral Radacava turned out, once it was approved. It is so wrong for these drug companies to not help ALS patients with the super high cost of their drugs.
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I am newly diagnosed with ALS and my Central FL ALS Clinic put me on AMX0035 compound 5 capsules twice per day .
after one month, lost my right arm by muscles atrophy. Weakness now is all over my body.
I don’t believe Amx hasn’t revealed all components intentionally as a fixed-dose combination of two compounds — tauroursodeoxycholic acid and sodium phenylbutyrate —Mam Sadek
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I am on Riluzole and Relyvrio for a year now, since diagnose. I have steadily lost muscle strength and now can no longer walk or use my right hand. The Relyvrio can cause a lot of GI symptoms per my pharmacist and I definitely feel nauseous and have diarrhea after taking it. I take 2 immodium with every dose and still have loose stool. Not sure its worth it Anybody else have ideas?
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I was recently diagnosed and swiftly put on riluzole and Relyvrio. With the recent failure of Relyvrio in the Phoenix trial, I fear that it will soon be off of the market. I have asked my neurologist her opinion, but she said it will be weeks -if not months -before we know more. Has anyone been told anything differently?
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Yes, the failure of the Phoenix trial was a blow. For months AMX0035 (Relyvrio) was touted as a miracle drug that us PALS were waiting for. It was rushed through approval from the FDA without a phase 3 trial.
I had been taking it prior to it being approved getting it from a compounding pharmacy then switching over to CVS Caremark once it was approved. I will say that at my last 2 clinic appointments that I haven’t lost any points on the ALS/FRS scale. In fact I gained 2 points. Is it from the medication combination that I’ve been taking or is it interpretation from the clinicians that are adding up the score from my answers. I don’t know.
I spoke with my neurologist when the failure of Relyvrio was made known. He wants to read the whole report before making a recommendation. He said that it was my choice if I wanted to continue to take it while it was still available or stop it. I have just received a refill yesterday so I’ll finish this month and then go back to taking Tudca.
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