Amylyx

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Dee Dee 0617

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Nikki, Just in case no one has told you today, you are a God send. Thank you for your strength and due diligence. This article gives that spark of hope. Hope it will be enough and in time., that we can't know, but it doesn't diminish the hope.
 

Tedstehr

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Thank you so much Nikki! I have a friend here in Vancouver who was in the trial shortly after his limb onset diagnosis. He was pretty sure he was in the placebo group because he felt he was progressing. But after six months he was given the actual drug and things seemed to slow dramatically. He is also on Radicava and Riluzole. I was wondering if it was a naturally slow progression but it seems he has backed the right horse!

Have they announced what significant means? And what do you think the time to market be? TUDCA is already available and Sodium PB doesn't sound too exotic. I am sure the teacher from Breaking Bad could mix up a batch PDQ!
 
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KimT

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I took Tudca for awhile but stopped because it did a number on my stomach. I have a very sensitive stomach. Tudca is very liver protective.

Ted, I'm sure Walter could mix us up a batch and, maybe, add some other ingredients to make us feel better.

Thank you Nikki. You have helped so many of us.
 

Kristina1

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Hi Ted, I was in the trial and am still taking it through the open label phase where you know for sure youre getting the real drug. I felt it was helping me from the beginning, and when the trial ended there was a 2-3 month period where i was off it before the extension phase began. during that period my progression sped up markedly, but slowed back down when i started taking it again.

The drug is TUDCA and PB. PB is already FDA approved for another condition, so you could have your doctor perscribe it off label, though whether insurance will authorize it is not for certain.
 

Samkl

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When I looked up TUDCA, it seems to be a herbal supplement of some kind. Am I googling the right thing?
 

Nikki J

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Samki I expect you are seeing the right thing. TUDCA is a non prescription supplement and is usually sold in 250 mg dose though occasionally 500 mg.

i believe there will be another trial needed before approval Ted

as Kim noted TUDCA can be hard on your stomach. If anyone decides to start it increase the dose gradually. There was a small trial of TUDCA alone that seemed to show benefit. The dose was 3000mg a day in divided doses

i haven’t seen the exact dose that made up Amylyx but your neuros will know
 

Tedstehr

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Thank you Nikkki!
 

Gceballos2

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I just read about Amylyx last week. The article mentioned UC Irvine which is only about 20 miles from me.

I am at the 11 month mark with ALS. IF ONLY THIS COULD DISTRIBUTED NOW.

I just had the worst choking incident tonight on a piece of english muffin. My chest is still hurting. I am lucky that I can still get around on 2 crutches. We are all at different points in this F###$$ disease. I fell apart when I choked tonight. This is so hard... and I know we all feel the same

I hope Amylix will soon be available. This just sucks.




I
 

Samkl

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I took Tudca for awhile but stopped because it did a number on my stomach. I have a very sensitive stomach. Tudca is very liver protective.
Kim, did you not feel any benefit outweighed the effects on your stomach?
 

Nanders

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Gceballos2,
I’m so sorry that happened to you tonight. It’s so damn scary!! I’m glad you’re ok & hope you stop hurting soon.
And yes.. in any stage, this disease sucks!
Wishing you & yours a peaceful Holiday!
 

Samkl

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I just read about Amylyx last week. The article mentioned UC Irvine which is only about 20 miles from me.

I am at the 11 month mark with ALS. IF ONLY THIS COULD DISTRIBUTED NOW.

I just had the worst choking incident tonight on a piece of english muffin. My chest is still hurting. I am lucky that I can still get around on 2 crutches. We are all at different points in this F###$$ disease. I fell apart when I choked tonight. This is so hard... and I know we all feel the same

I hope Amylix will soon be available. This just sucks.
Oh no☹. Not sure what time it is where you are (8:50pm in NSW), but I hope you’ve recovered somewhat! That must have been terrifying. Are you at home by yourself? Xxx
 

Nikki J

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AMX0035 twice daily--a combination therapeutic including 3 gram of Phenylbutyrate and 1g TUDCA
 

KevinM

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AMX0035 twice daily--a combination therapeutic including 3 gram of Phenylbutyrate and 1g TUDCA
Hi Nikki. Thanks so much for posting this (and happy holidays). So I’m clear, is the 3g/1g the total amount for the twice daily dose, or is that for one dose? Thanks, Kevin
 
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