Relyvrio

[Nikki J]

Relyvrio has medical grade TUDCA. It is possible that the compounder used the kind of TUDCA we can get on amazon. To source medical grade we have to get it from Europe with a prescription ( and last I checked it was about 10 dollars a day for 2 grams - the amount in relyvrio). I know someone who switched to amazon tudca to the European kind and did have some new gi issues. Good news is they adjusted fairly quickly and were ok on it

 

[North Georgia]

Nikki,

My Mayo clinic appointment is over a month away so I got some Sodium Phenylbutrate from Europe and the TUDCA from Amazon. Just started taking it - trying to figure out the doses, etc.

Any idea how to translate the powder into milligrams in a spoon ?

Thanks,

NG

 

[Nikki J]

the sodium phenylbutyrate? Doesn’t it have the amount/ concentration on the container? If you can tell that it should be easy to work out

 

[North Georgia]

It has the total grams in the bottle but no directions on breaking it down to milligrams.

Thanks

 

[Nikki J]

If that is all it has I don’t see how unless you measure it. It doesn’t say how much is in the bottle in another unit? You want 3 grams per dose

 

[North Georgia]

It has no unit instructions. I'll search grams to spoon online.

Thank you

 

[Nikki J]

But you don’t know the density. The number of grams of salt in a teaspoon is different from sugar etc

 

[MupstateNY]

Could I say something about diarrhea?

The following can help stop things up: white rice, ripe banana. Stay away from coffee, fats, oils, spicy. Dairy can be complicated.

Boiled or steamed vegetables such as sweet potato, zucchini, potatoes, are good choices. It can also be helpful to drink the cooking water. Low-fat chicken is good. Egg white is good. Watch out for fatty foods such as peanut butter, salmon, avocado.

Another good thing is cooked apple. I use the gadget to cut it up into six pieces without the seeds, and put it in the microwave briefly with a little bit of water. Vented plastic wrap prevents a mess and helps it cook more evenly. Again, the cooking water is good to drink.

I learned these things when I was living in the Third World.

Also, the doctor may have some suggestions.

When diarrhea is bad, food is just going straight through you and you're not benefiting much from the food.

Electrolytes could be helpful if it's pretty bad. There are recipes online. One doesn't have to suffer with the horrible taste of Pedialyte.

It's important to drink extra water if one is getting dehydrated from diarrhea. You can watch your urine output and color to gauge. Also, dehydration might produce swollen feet and cognitive dulling.

 

[Tomswife]

Thank you mupstateny. Did not know this.
Tom has swollen feet.

 

[MupstateNY]

Tomswife, would mild compression socks be helpful for the swollen feet? They have some affordable ones at CVS. I like to fold the tops down after a while. It seems like varying the position of the top band as often as needed makes me more comfortable.

Also, I wonder whether a trial of a few days on more hydration could be helpful as a way of gauging whether Tom is a bit dehydrated? (Which might contribute to feet swelling.)

 

[Mary2]

We do use mild compression socks during the day...They just come to the lower calf. They are helpful. We have gone in the opposite direction. My PALS is on a daily diuretic and then I have another diuretic I can use as needed for some swelling in his hands.

 

[Tomswife]

Yes. I am trying more water in the peg tube.
I have not tried compression socks. But i did get a foot massager on amazon.

 

[Tomswife]

I reached out to the clinic and they advise going off Relyvrio for 7 to 10 days. To see if the relyvrio is causing the diarrhea. I have akso increased Tom's water via the tube. Will let you know.

 

[MupstateNY]

Tomswife, congratulations on getting an answer from them.

I wonder how helpful Relyvrio is expected to be for someone at your Tom's stage -- I don't know. I just know that before the clinic would give me the Riluzole, they scored my ALS Functional Rating Scale to make sure I wasn't too low to get the meds covered by insurance. I was rated at a 39. (I think at this time I might have reached a 38, though.)

 

[Mary2]

We have been told that all one needs for Relyvrio is an ALS diagnosis. My PALS missed out on Radicava..He was too far along for insurance to pay for this.