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Yep sounds like you’re doing it as they recommend. After reading the longer info from Amylxx, I think I’ll be mindful to not eat a super heavy meal immediately after taking it. Absorption is 30 minutes and they say a high fat meal decreases absorption. So I just won’t chase it with a ribeye 🤪...

Interesting about absorption— Following oral administration of a single dose of RELYVRIO in healthy subjects under fasting conditions, sodium phenylbutyrate reaches a median Tmax of 0.5 hour. Taurursodiol reaches a median Tmax of 4.5 hours. Effect of Food 12.3 Pharmacokinetics Absorption...

While I have done the plug your nose trick—I doubt it would work with Relyvrio. It smells fruity. I’ll try it though. You should try a sip 🤪🤪 it’s like a bitter/bile gag reflex to me. A feeding tube solves that problem 🙃 Kim

🤞 that will be the same for me. Another person suggested something to coat your tongue/tastebuds ie chocolate syrup or pudding, and coffee/creamer after & between. That has helped me the last 2 days.

Thanks Nikki and Lisa-I’ll definitely try those. Hopefully I don’t have GI side effects 🤞 happy there’s another approved drug but definitely some challenges with this one.

I just got my starter pack of Relyvrio and took the first one today. Well actually half—the taste is so bad. Like bile/vomit 🤢🤢 I’m pretty tough, but man…2 times a day of that, I need some tricks! I used the listerine they sent. I also thought about using a straw? Idk I’m struggling with this...

I got an email the other day about Dr. Bedlack finally starting the Theracurmin study. I got booted because I’m in the Edaverone oral extension trial (which is easy and I tolerate it well and I hope they approve it soon and ditch the IV infusions). Also, I’m keeping tabs on Project ALS and they...

Hi there 😊 here’s a link to the different dosage study. I don’t see where it specifies what the dose regimens will be. It looks like they are recruiting. I’m in the extension study now. My doc felt that it would be more beneficial to take it daily than 2 weeks on/off...but oral makes that much...

Just an update. I was wrong, I’m in the trial extension now. Not sure how long they’ll do it...I got 6 months of drug a few days ago. Kim

I just get nervous when big decisions could drastically change finances 🤪 thank you both for your experience. Having my doc write a letter is a great idea. The 2 year mark is next November...so a fair bit of time.