AMX35

kellysal

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I just received a compound of Sodium Phenylbutyrate and Tudca. The pills are huge and I can’t swallow them. Supposed to take 10 per day 5 in the am 5 in the pm. They said you can open capsules and put in food or water. It’s awful. Any suggestions as to how to mask the taste? I tried yogurt, juice and water..
 

lgelb

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Applesauce, non-dairy pudding...
 

lisa g

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Definitely applesauce. Curious where was it compounded ? If I'm not mistaken your in south Florida. Dr Granit did tell me about a pharmacy that would compound the ingredients. Were you able to get it covered by insurance?
 
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kellysal

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The pharmacy is Wellpack Pharmacy in Tallahassee FL. No it was not covered by insurance
 

steve613

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We have been using Wellpack and their service is good. TUDCA is over the counter and cheap, but sodium phenylbutyrate is an inexpensive "orphan" and terrifically expensive by prescription only. We were denied insurance coverage for sodium phenyl butyrate since its use in ALS is off label (for now). We heard that FDA approval is expected in the first quarter next year.
 

lisa g

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Can I ask what wellpack is charging?
 

kellysal

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300 pills 1 month supply. $600.00 You are supposed to take 10 pills a day. 5 am /5 pm However I am starting out slow to work myself up to that . I had an issue previously with the SB.
 

Nikki J

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I know tudca does taste dreadful if you open up the capsule. I hope applesauce helps but if you continue on your next refillcan you ask them to work on taste masking? I know amylyx had to do that when they started their trial. I also just saw on the wellpack website they talk about working with you to make tastes palatable
 

kellysal

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Lol.. it’s beyond dreadful! I’ll try the applesauce tonight.. 1 pill in 8oz of water this morning! At least I’ll be hydrated! I’ll ask them next refill. Hopefully I will be able to tolerate these without side effects.
 

Bestfriends14

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@kellysal could I please ask how many pills you take per day just for the Sodium Phenylbutyrate? My husband is currently taking Tudca, but would like to add the sodium part to make up the full AMXYL0035, or whatever it's called.

Thank you!
 

kellysal

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Sodium Phenylbutyrate is a prescription drug. It has not been approved by the FDA yet as treatment for ALS it’s very hard to get insurance to cover it. AMX35 is : 3G of SP with 1G Tudca twice daily
 

kellysal

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Why non dairy pudding?
 

lgelb

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Creamy, kind of oily, easier to mask taste of grainy meds, but dairy tends to curdle/clump things like that, thus "non"-dairy. Chocolate would probably work better than vanilla.
 

kellysal

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Well the applesauce did nothing . After a few days I got it down to Hershey’s dark chocolate pudding! 2 pills at a time.. 1 full glass of water for 2 pills is doable. Just wanted to make sure diary didn’t effect it.
Thank you!
 

jud

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Sep 1, 2021
Messages
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Reason
PALS
Diagnosis
03/2020
Country
NL
I have bulbair Als diagnosted april 2020.
The main problem are my arms. I use tudca 2x 1 gr from june 2020 till now, and Riluzol.
I have good results, because till 2 month ago i could still play gof.
This week i started slowly with natriumbutyraat, (not natriumfenylbutyraat, because this als in holland very expensive similar to USA)
I am not sure if i need 2x 2 or 3 gram butyraat per day.
Is somebody who knows this very shour?
Regards Jud
 
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