Old 09-19-2017, 11:14 PM #1 (permalink)
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Default Amx0035

My husband has been approved for a trial of AM0035.

Radicava and Rilutek can be used during the trial. It has just now this week received Orphan Drug status. My husband called because he googled Trials.

Has anyone else heard of this?
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Old 09-20-2017, 12:23 AM #2 (permalink)
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Default Re: Amx0035

It is a combination of TUDCA which many of us take or have taken and something else that escapes my memory but it hard to obtain in the US.

At least one other member here is in the trial

Good luck
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Old 09-20-2017, 12:43 AM #3 (permalink)
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Default Re: Amx0035

PR on the trial is here.
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Old 09-20-2017, 01:01 AM #4 (permalink)
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Default Re: Amx0035

Best of luck to your hubby!!! I hope all goes well with the trial, please keep us posted!

What is TUDCA Nikki? Should my husband be taking it too?
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Old 09-20-2017, 06:48 AM #5 (permalink)
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Default Re: Amx0035

TUDCA is a supplement. Lots of threads but this one has links to the 2 studies I know of. One small trial of PALS and a lab study that was specific to c9 and mentions TUDCA Tudca?
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Old 09-20-2017, 07:56 AM #6 (permalink)
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Default Re: Amx0035

I heard of Tudca, yes I recall reading on it here. I think the second drug has been tested in Europe but not/ not as much here in the U.S.

Thanks Laurie yes came across that piece as I Googled around.

When Brian talked to the study team, they said there is a growing belief the future of really haulting ALS is in drug combinations, not a single drug and perhaps not even in stem cells. Funny, I have been thinking that myself for a while.

I going to further guess that like AIDS there is no moment with "a cure" in the conceivable future. It will just be a time where it's really commonplace that the condition is stopped in its progression indefinitely. That will be a beautiful thing.
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Old 10-11-2017, 04:20 PM #7 (permalink)
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Default Re: Amx0035

You know, I have about had it with the whole notion of drug trials. Bless you all for doing it, but wow just wow. This has been yet another run around. First, approved of the EKG was good, then EKG good BUT maybe not meeting perfect clinical definition of ALS. Oh, and also had been told you could be in the study at any point in receiving Radicava but now must wait 30 days after starting, as is usual with studies but we were told this would not be the case.

Yes, I know there are reasons for all of this. Yes, I know research is essential to finding effective treatments. This however is our third time on the merrygoround of in/ not in a trial, and getting misinformation after spending much time and energy. The screening was a two hour appointment during which we were told he was as a shoe in.

I also recall the time someone at the U dangled the nuerostim study in front of my husband only to hear at the next visit they had plenty of participants. That was right after they told him he lacked the C Reactive protein for another study after he got pumped on that possible trial.

Nope. Not wanting to waste money re of our time on these, call me selfish. I don't care if the AMX team called and said he could go in without the perfect clinically defined ALS, I told him to skip it and avoid the mess. You're suppose to beg to help science with slim chance of personal benefit, AFTER being told maybe yes no yes maybe?

Bless you who do it, you are the future of the dream of a cure. Me, I am just fed up with seeing him hope only to be let down.
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Old 10-12-2017, 12:28 AM #8 (permalink)
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Default Re: Amx0035

Hi Lenore,

I admire you for going through with it for as long as you did. I know my dad would have given up even earlier. I think all he wants to do is to spend whatever time he has left in peace.

There is no right or wrong with these things.
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Old 10-13-2017, 03:45 PM #9 (permalink)
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Default Re: Amx0035

Oh Lenore, heartbreaking!

I hear ya, regardless of their reasons, the very real personal impact on people who are already highly stressed, dealing with this disease and the fatigue that goes along with it. UGH.

I also echo - bless all those who are able to participate in trials. Doesn't mean those who can't are anything less, whatever reason.

Try and do something really nice for both of you for a day - make memories now!
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Old 10-24-2017, 11:48 PM #10 (permalink)
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Default Re: Amx0035

Well, in yet another turnaround, Brian got a call yesterday that he is approved for the study. I will be happy because he is and it undoubtedly contributes to science. This study is a bit different in that only 20% will get placebo. He started Radicava today too, and can start the study drug in two weeks. Whatever happens, I guess it's no longer just us and the Rilutek.
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Old 10-25-2017, 02:21 AM #11 (permalink)
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Default Re: Amx0035

That's amazing Lenore! I hope it works for your husband. Please keep us posted

A 20% placebo trial is way better than the usual 50/50. And i'm glad to hear they're allowing him to be on Radicava too - perfect!
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Old 10-25-2017, 07:15 AM #12 (permalink)
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Default Re: Amx0035

I had a chat with our Doctor. He does some research himself, and he said the process really is more trying at present because an unprecedented number of studies are happening all at once for ALS and many other conditions. I think he meant to say this is all happening so fast the research teams are making it up as they go long with criteria and protocols.

It is both an exciting and a trying time to be a participant.
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Old 10-25-2017, 02:54 PM #13 (permalink)
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Default Re: Amx0035

That's great news and THANKS to you and Brian for participating, it's so important and so appreciated xx
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Old 10-26-2017, 07:13 AM #14 (permalink)
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Default Re: Amx0035

That is great news! Please share updates with us, Lenore!
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Old 11-13-2017, 01:24 PM #15 (permalink)
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Default Re: Amx0035

Thanks Lenore to you and Brian for participating in the trial. I am hoping the best for you. How is Brian tolerating the Radicava?

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