AMX0035

[Bestfriends14]

I have 3 months of the above because my husband couldn't deal with the side effects. That's too bad as now I have the meds sitting in my house collecting dust. How unfortunate.

 

[Tomswife]

So sorry. Can you share what the side effects were that were difficult. We are hoping to be on amx in December, when available.
Kathleen

 

[lisa g]

I'm sorry Wayne wasn't able to take the medication. I have been taking it through a compounding pharmacy in liquid form for the last 10 months. Whenever I get a refill I noticed that I will have GI issues for the first couple of days then it subsides.I currently have a prescription in for Relyvrio (AMX0035) and am curious to see what side effects if any from the powder versus the liquid form.

 

[Nikki J]

That is really interesting Lisa. You are taking it continuously? No gap between refills ? I know you are following directions for prep and storage so I wonder if the liquid form is less stable and possibly loses some potency over time? Relyvrio directions do say it needs to be taken within an hour of reconstitution. Of course I don’t know but if it is the same at the end of one fill as in the beginning I don’t see why it should bother you. If it is the case the powder should resolve that

 

[lisa g]

I take it continuously. One thing with the liquid is that it has to be refrigerated and not be left out in the light. They fill it in 3 individual bottles. I was unable to have it filled in June due to the nationwide shortage of Sodium Phenylbutyrate. I'm not sure if it was a coincidence but I felt my symptoms more being off of it. I'm curious if the granular packets will be different.

 

[Swaite1]

I have found that eating immediately after taking the medication works great for me with stomach upset. I take the compounded capsules and immediately eat something right after taking them. If don't, my stomach feels like it's trying to cramp want and hurts. Maybe give that a try?

 

[Bestfriends14]

@Tomswife Wayne had hyper produced mucous after each time he drank the liquid. It was one sachet of powder, mxed with one cup of room temp water. As soon as he had the drink, he had mucous plugs, choking badly, and nearly passing out. It was horrible to watch. GI issues were minimal to non-existent, with the exception of loss of appetite. He's been off the meds for two weeks now and no longer has mucous issues. However, his appetite has not returned and his breathing has worsened significantly. The meds progressed him so quickly. It was the exact opposite to what was supposed to happen-slowing of progression.

 

[Tomswife]

So sorry to hear. I think we should not assume this is a miracle drug to slow progression.