June, 2021
Drugs
Now that I’ve got your attention, I thought I would run down for you all the chemicals I ingest on at least a daily basis. I’ll spare you the over the counter preparations because they mostly deal with Door Number Two and we don’t want to over share now, do we.
If some of this sounds familiar it’s because you are a loyal follower of this blog. Thank you. You’re the best. As for the rest of you, go back and read all the blogs you missed. They’re quite entertaining.
I am fortunate enough to be one of the less than 140 people that have access to pharmaceutical grade AMX0035. This med is the subject of my blog titled Centaur. It acts by reducing the oxidation and mitochondrial stress signals that are associated with motor neuron degeneration. In other words they keep your motor neurons free of rust and uncool vibes.
Soapbox alert!
Recently the FDA, in its infinite wisdom, required this med to go through an expensive and time consuming Phase 3 trial, even though the sample size of the completed Phase 2/3 trial unambiguously demonstrated efficacy and was close to the same sample size of the trial which led to the FDA’s approval of Radicava. There must be some concern over efficacy that wasn’t present with Radicava because there were no safety issues. As for me, because both Radicava and AMX0035 both attack oxidation, I discontinued Radicava and saved my insurance company $140,000 a year. The problem here is that AMX0035 is being biohacked. Some pALS are buying their chemicals on Amazon and mixing them on the kitchen counter. We deserve better.
End of soapbox.
The next med has been in the arsenal a while. Riluzole impacts the body’s reaction to glutamate, a sort of gasoline for the motor neurons. Too much gas and the motor neurons get too excited and start to degenerate. Bummer. Taking this med gives me an extra few months on the back end. Hey, I’d rather have a few more months on the front end, but beggars can’t be choosers.
Those are the only meds designed specifically for ALS. Even Radicava is a repurposed stroke therapy. From here on out, we’re in the land of shared therapies.
The big one for me is a muscle relaxant called baclofen. I take a hefty dose of this stuff and I’ll go through withdrawal if I don’t take it regularly. See my blog entitled The Stanford Health Resort if you want to know more or you otherwise want to share the joy. I suffer from muscle spasms that stiffen my legs so they stick out like a… Well, let’s just say they stick out. Recently this particular disease symptom is attacking my chest, which at full force feels like wearing a cast iron torso girdle the screws of which are tightened by a sadistic valet.
Coughing, which plagues me frequently, is caused by secretions building up in the throat which my diaphragm is too weak to expel with a single hack. To make my coughs more useful, I engage in a nebulization. Which sounds like something out of Star Trek:
“Speculate Spock.”
“It seems to be some form of interstellar nebulization, Captain.”
If you want to know more about nebulizing and the other controlled substances I am taking or plan to take, set your phasers to nebulize and join me on the next post.
See you next time.
Embrace The Suck 
Love you Bob. Graham is on a trial drug from Healy that seems to have some efficacy called Verdiperstat. As soon as his six month stint is over, we’re going to join the ALS street gang who is mixing their own AMX00035. He’s on Baclofen also. He’s not tried Radicava yet. Graham has a stats-nerd-rant about patient burden in FDA trial structure if you want company on your soapbox. I’m sure he’d be happy to share it with you. He’s also written a paper about some of what he’s learning from the Answer ALS genetics database. I very much enjoy witnessing my husband engage in stats sparring. He’s relentlessly stubborn in matters of math and computer science which since I’m a nerd also, is what made me stalk him in our initial courtship. Not even kidding. Keep on fighting the good fight. We are with you 100% Fondly, Cristina (cristinaspencer@gmail.com)
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frightening and fascinating and a wonder that there ae drugs that have actually been developed to aid you (sometimes), and furthermore you keep track of them and that you share all of this information which takes another great amount of energy; I repeat in case you missed the other times I commented, yoiu are amazing.
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You continue to amaze me with your sardonic wit and your resilience in the face of what would make most of us incapable of moving past self-pity. So, again, thank you.
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Once more, Bob, you enrich our lives with not only all you know, but all your abilities through your extraordinary writing skills and ongoing commitment to share with your readers all these things we might (and certainly in my case, would not) have an iota of knowledge about, even as you and all those close to you are going through these immensely trying times. Many thanks for all your efforts. I, for one, am a definitely changed person, thanks to all of your contributions.
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Bob- thank you for sharing your personal experience so freely. I am always humbled by each word. With gratitude- Deb
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Live long and well, maybe not prosper… Love the Trek references.
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So the FDA can approve Aduhelm (aducanumab) for Alzheimer’s without much (or any) evidence it will work at all and not AMX0035? I’m glad you have access to it in the interim without Laurel having to set up a moonshine operation to make it in the kitchen.
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Dear Bob, thank you for letting us into your life in this way. Each of us is fighting our own battle, of course, but rarely do we really understand what that means with other people. Your struggle is so much more extreme than most others, but by letting us know what you go through every day you help not just those who love you, but you help the entire ALS community support each other, alleviate some suffering, and come closer to finding a way to deal with this horrible disease. You have my deep respect and admiration.
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HI, Bob. You should submit your blog for a Pulitzer! And also for the Medal of Honor equivalent in giving your all to others while braving a deadly disease! My best to you and St. Laurel!
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Bob, I continue to enjoy reading your posts. You’re becoming quite the expert on meds.And it’s amazing that you keep a positive attitude through the whole thing.
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You never cease to amaze me. I am learning a lot. More than I ever thought I wanted to know, with a strong wish that it was not you being my teacher. Love to you and Laurel.
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Bob I think you could teach a pharmacy class. You’re more aware of your meds than many people are.
Knowledge born of necessity. You are amazing- thank you for teaching us
Love you lots – Marie
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