Anyone else on AMX0035?

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Bestfriends14

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Is anyone else taking AMX0035? If so, have you noticed any slowing of your progression? Also, what were your side effects and how long did they last? My husband has been on it only a few days, but his side effects are increased mucous shorty after taking ithe drink, lack of appetite, nausea, and other issues. And the taste! The taste is like Tylenol crushed up in water. I tasted a bit and it is God awful. Like, thanks Science, do PALS not have enough issues going on? Any advice on how to dull the taste?

TIA
 
Re the taste I believe they tried to reformulate it for greater palatability! It was worse! Our Kristina was one of the first people in the trial and she related here how ghastly it tasted and that she struggled mightily They ended up pausing the trial to improve it irc. TUDCA alone is pretty nasty too. I am told for most the gi side effects settle in a month or less. People testified at the ADCOMM in the spring they stabilized.
 
Ok, I can handle a month. He was on Tudca and the GI side effects were horrendous for about 3 weeks. This powder, though, is having the exact opposite. I need to be liberal with feeds of fibre for the poor guy. Ugh...
 
Hello Tia. I was diagnosed on 10/2021 and about that same time began taking the off-label Sodium Phenylbutyrate (SP) and TUDCA. Initially I had no significant side effects, other than having to deal with the terrible taste which I describe as sewer sludge. Lately it has been giving me heartburn. My current routine, twice a day, is to add 3 grams of SP along with a liberal teaspoon of sugar (thanks Mary Poppins!) into a small juice glass. I add a measured shot glass of water and stir with a handheld electric frother for about 10 seconds. Then I put two Nutricost TUDCA 500mg capsules (from Amazon) in my mouth and swallow them down with my shot of SP & sugar. I make sure to have a glass of water ready to rinse my mouth right after swallowing the concoction.

I have also been taking rhiluzole for about a year and a half and have recently begun radicava ors. It is of course impossible to say, but I don't believe the medications have slowed the ALS progression at all. I have been going down about 3 points every quarter on the funky als-frs-r scale.

I hope that is helpful. Good luck!
Harvey
 
I have been having AMX0035 compounded at a pharmacy in Florida since January. They offered it in capsule form and liquid. The pharmacy also offered to add different tastes to mask the nastiness. Yes the liquid has a horrendous taste and burns your throat when taken orally. I had a peg placed in April and now take it via tube with no issues. I haven't had any adverse side effects from it but I didn't have any problems when I was taking Tudca by itself. Some people experience GI issues from this medication.

Do I think it's beneficial? I would have to answer yes. There was a national shortage of Sodium Phenylbutyrate and I was unable to refill the prescription for a month. I felt worse doing basic functions while I was off it.

I have heard of PALS mixing it in Applesauce or flavored yogurt to mask the taste. I hope your able to find a happy medium and gets over the hump of side effects.
 
lisa g - Are you able to still get your prescription filled in Florida? I have a prescription for a compound pharmacy for my wife but so far unsuccessful in finding someone to fill it in Washington State.

Thanks.
 
Yes, I get it filled at Wellpack Pharmacy in Tallahassee Florida. They just had a price increase due to the nationwide shortage of Sodium Phenylbutyrate so its kind of on the expensive side. $750.00 for the liguid and $800.00 for capsules.
Keep your fingers crossed 🤞 that the FDA approves it on the 29th.
 
lisa g - Thanks for the info. Appreciate it. Been waiting on the 29th as well. Then waiting game on insurances approving and so on. Fingers are crossed for sure.🤞
 
This morning was much better than the few preceding days. We got my hubby up, gave him his pineapple juice with his pills, did the remaining stuff to ready him for the day, then, we gave him his gross AMX liquid, but with every sip, we gave him a sip of warm, black coffee. It seemed to do the trick because he felt less nauseated, had no "toileting issues", and no mucous. I guess the black coffee lessens the nastiness of the drink. Plus, the enzymes in the pineapple juice and his mucinex, negated any excess mucous. Phew!!
 
Thats great that taking the medication was easier today. I forgot to mention when I took the medication by mouth I would immediately pop a piece of ginger in my mouth that took away the horrible taste and burning.
 
Major mucous episode again. I'm not sure if it's the disease or the medicine. Last night, Wayne had a bite of an ice cream mochi from TJ's. I can't imagine that tiny bite would cause that much mucous, would it? It lasted from about 8 this morning until 11
 
I have been on AMX for about 1 year. Originally I was taken both separately. Then we sent the prescription to a compounding pharmacy. Dosage 10 pills a day. I can’t tolerate 10 gastrointestinal issues. I take 8 a day. I open the pills and put them in water at least 8 oz . Less gives me heartburn Directions from Amylex not to mix with anything but water. No juice for at least an hour. Chasing it with milk kills the after taste. Honestly it’s awful but you get used to it. I tried the liquid even worse. As for effectiveness.. who knows! I was impressed by several testimonials given at the committee meeting for the FDA by several people who have been on it for 2-3 years following trials.
 
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