Amylyx

Nikki J

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I read it as one dose so twice a day. If you are considering it you would need your neuro to prescribe so you could clarify. As an off label use I doubt very much it would be covered. I looked it up on goodrx and phenylbutyrate at that dose twice a day would be over 4000 a month US.
 

KevinM

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I read it as one dose so twice a day. If you are considering it you would need your neuro to prescribe so you could clarify. As an off label use I doubt very much it would be covered. I looked it up on goodrx and phenylbutyrate at that dose twice a day would be over 4000 a month US.
Thanks. Certainly out of my price range.
 

Nikki J

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For most of us I think. You could try to get it covered if your neuro thinks it worthwhile
 

Dee Dee 0617

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Merry Christmas. Thank you again Nikki, this is a wonderful Christmas present of hope!
 

Dee Dee 0617

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Gcebellos2
I am so sorry that happened to you. My dietitian has me chewing 34 times (yes I feel like I'm back in first grade ) then turning to the right and tucking my chin. When I was first told my right vocal cord was paralyzed, they told me to try this. It would alleviate the chance of food entering my lungs. The amazing side effect for me is this has stopped my choking incidents completely for now at least.
 

Tedstehr

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Dee Dee,
I think this response is in the wrong thread but it has been a lifesaver for me nonetheless. The last few weeks have seen me choke at almost every meal. Knock on wood, it may be a thing of the past. Thanks so much! Thank goodness for accidental postings!
 

Samkl

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Just wondering if anyone has any further thoughts on Amylyx/Tudca? Kristina1, would you recommend pursuing this on a “well, it can’t hurt” basis?
 

Kristina1

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Samkl, absolutely!! I really feel it is helping me. Whenever they decide to close the open label phase I will be continuing it with OTC TUDCA and an off label prescription for PB.
 

Samkl

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Is PB the name of a medication in the US or, and does it have a different name? I can’t find it when I look it up here.
 

Nikki J

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Phenylbutyrate. see my earlier post for the dose. It is extremely expensive in the US. I hope it is available and cheaper where you are
 

Samkl

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Thanks Nikki and Kristina. Does it have another name in the US? Is PB the name of the medication, or the active ingredient in it?
 

Kristina1

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Thanks Nikki and Kristina. Does it have another name in the US? Is PB the name of the medication, or the active ingredient in it?
Looks like the trade name is Buphenyl
 

KimT

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Kim, did you not feel any benefit outweighed the effects on your stomach?
I'm progressing very slowly so I didn't notice anything one way or another. I believe TUDCA is very safe and does protect the liver. That's why I switched to Milk Thistle. It has similar properties and, when you take most drugs, the liver needs support. Milk Thistle has also been known to cause stomach upset but I tolerate it well as long as I take it with food.

I have very bad acid reflux and gastritis. Stopping TUDCA was a quality of life measure. I was still walking a couple of miles a day when I stopped. I'm pretty sure I took it in 2016 but for a very short period of time.
 

Big Steve

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Just wondering if anyone has any further thoughts on Amylyx/Tudca? Kristina1, would you recommend pursuing this on a “well, it can’t hurt” basis?
Samkl,

For TUDCA alone, the report published in 2016 on a 34 participant trial indicated some positive results: Tauroursodeoxycholic acid in the treatment of patients with amyotrophic lateral sclerosis. - PubMed - NCBI.

In Europe there is a new trial (recruiting currently) for TUDCA + Riluzole that is targeting 440 participants: Safety and Efficacy of TUDCA as add-on Treatment in Patients Affected by ALS - Full Text View - ClinicalTrials.gov.

This trial registration currently indicates the following dose:
"Drug: Tauroursodeoxycholic Acid
  • Tauroursodeoxycholic acid (TUDCA) 250 mg capsules
  • Doses: 4 capsules (1 g)[sic] twice daily 10-15 minutes after a meal"
 

Samkl

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Thanks Big Steve. I’ve read a bit about UDCA and TUDCA. Given the studies on both in Parkinson’s and now ALS, is it worth going on just the TUDCA (without the super expensive PB), since it is readily available and somewhat affordable?
 
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