Relyvrio taste —how do you take it?

[Babycakes]

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 one!

Any tips, tricks, advice? What helps you take it orally?

 

[lisa g]

I take it through my feeding tube but other people have said a spoonful of honey helps. Before when I had my feeding tube and took it by mouth I found sucking on a piece of ginger helped.
I have a question, does anyone experience extreme dizziness and weakness after taking a dose? It lasts for about an hour.

 

[Nikki J]

I couldn’t tolerate it. Not the taste but the gi side effects. For the taste issue-rinsed with mouthwash before , drank it as fast as I could ( no bulbar issues so very fast) then immediately rinsed with mouthwash after then ate a piece of ginger. honey didn’t do much for me. ymmv

 

[Babycakes]

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.

 

[Buglaw]

for me, it got markedly better the more times I had it. After my first time, I thought it was the worst thing I had ever had. But now, finishing my first month, it’s merely pretty unpleasant. It took about a week for my taste buds to adapt.

 

[Tomswife]

My PALS TOM, takes it via his GI peg. Effective Ways to Drink Something Without Tasting It

If I have to drink something unpleasant, I take a deep breath, hold my nose and swallow it. Breathe and do again.

This is from internet...not ALS specific.

Effective Ways to Drink Something Without Tasting It

1. Plug Your Nose. The flavor will be greatly reduced when you plug your nose while drinking. ...
2. Breathe Through Your Mouth. The majority of the flavors of the beverage enter the nose. ...
3. Exhale Through Your Mouth. ...
4. Eat Something Before Drinking. ...
5. Ice Will Do the Trick. ...
6. Use a Straw.

 

[Nikki J]

Relyvrio needs to be room temperature. No ice!

 

[lgelb]

Also note as per the package label NOT to take with food -- the absorption difference is considerable.

 

[Babycakes]

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.

 

[Babycakes]

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

 

[Babycakes]

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
Reference ID: 5052718
6

Administration of RELYVRIO in the presence of a high-fat meal resulted in both significantly slower absorption (Cmax reduced by 76%) and lower overall exposure (AUC reduced by 54%) of sodium phenylbutyrate. A high-fat meal did not significantly affect the Cmax for taurursodiol, but AUC was increased by 39%

 

[PiratesWife]

We found a milk frother to froth the meds in the water helps. Eating anything with tomatoes in it after helps, tomato sauce in pasta or tomatoes and cream cheese on toast kills the aftertaste. As well as chocolate, chocolate milk (dairy or non dairy) and chocolate pudding help too. We call it the stink drink.

 

[Marieb425]

Lgelb, could you explain about not taking it with food? The packet instructions say to administer it before a snack or meal.

My PALS is also on Radicava ORS, so he takes that in the morning when he wakes up and then he waits an hour, takes the Relyvrio, and then eats food. I just was like yikes have we been doing this wrong?!

Edited to add - he’s also on Riluzole but he only takes it one time a day due to side effects he experienced on it when taking it twice a day. But mostly wondering about the morning medication schedule and food. Thanks!

 

[affected]

All the online information says take before a snack or meal - but does not say how long before.

 

[Marieb425]

Affected, I know … ugh. I wonder if we should message his care team and ask them if we’ve been doing it correctly with the medications and eating.