john hamilton
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Just completed the first 14-days of Radicava doses. Ugh! Tastes like gasoline! No apparent side effects…well, maybe my walking’s a bit more wobbly. I’ve got the bulbar-onset version of ALS and have rapidly lost my ability to speak legibly. Just as well, for some, I suppose. Was 206, now, a year later, 176, but not ready to get PEG’d yet. Oh, and I’m taking 2 gms a day of TUDCA (synthetic bear bile, I read), and of course the Riluzole.
My spirits are still pretty good. Had a good life. And being 81, I’m just just glad to still be kicking. I could moan about not being able to do road-bicycling now, or take nice long walks in the woods, or no longer able to do push-ups, but I won’t.
Coincidence, I’m sure, right? But seems strange how I developed ALS symptoms shortly after having a mild case of COVID. Anyone else?
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I dunno. I thought I had some sort of lingering, post-COVID effect when I started stumbling on certain words about 18 months ago. But then an ENT doc suspected that I might have MS. Humph! I sloughed off that idea! But then it got worse! So I tried a neurologist, who promptly recommended my getting an EMG. Bingo! ALS strongly suspected, even though I was 80 years old at the time! Sent to another neurologist who specialized in ALS diagnosis. Another EMG. Yep, for sure, it’s ALS. But being old, I guess I’m fortunate, in that, it’s a lot better than being hit with ALS at a younger age! Now I have a good reason to take it easy. But I can feel for the folks who are younger and get the same news. I’d be really frustrated too.
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Per https://www.alzforum.org/therapeutics/albrioza: “In a clinical study conducted 10 years ago in Milan, Italy, TUDCA alone reportedly had a treatment benefit in ALS. In a Phase 2 trial in 34 ALS patients, treatment with 2 g per day for one year slowed deterioration on the ALS”
But I also read somewhere that while TUDCA showed relatively little benefit, the two compounds TUDCA and phenylbutyrate, which comprise AMX0035, have a synergistic effect, multiplying the (expensive) phenylbutyrate benefits by an order of magnitude.
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IS “Ammonaps” covered by insurance in the states?
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I think the more critical question might be, When will insurance cover the AMX0035? Maybe a good six months after FDA approval? And now with Fed’s ability to negotiate drug prices, wonder how much longer that will delay insurance approval!
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My ALS NP says that one of the EAP qualifying criteria is that you must have contracted ALS at least three years prior!
Can anyone confirm or refute that?