» On 10/01/2026 12:00:00 AM Mountain Standard Time, Alan wrote:
Clinical Trial Junkie. 

Hi. My name is Alan... and I'm a Clinical Trial Junkie. 😉
I was diagnosed with Myasthenia Gravis in June 2025 and almost immediately began applying for MG clinical trials. MG is supposedly incurable, but not usually fatal, although it killed Jackie Kennedy's second husband in March 1975 and my friend Katie in May 2026. However, a lot of researchers are working hard to change MG's "incurable" status, so I finally found a clinical trial that was testing a promising new MG medicine, and I enrolled last December. But after nearly eight months, I came to the conclusion that this new experimental drug was not going to help me, so I quickly started looking for another trial. I had become a "Clinical Trial Junkie." 😉 During my search, I discovered some fascinating opportunities in cutting-edge science. I refuse to let MG turn me into a victim for whatever time is left to me on this planet, and I want to fight it proactively by taking back my agency, the reins of my life. I would also like to share the resources I've found with other neighbors who may be in the same—or similar—boats. So this new Facebook Group is a safe space where we can all share-and-share-alike!


* Inspired by Dr. Brian Koffman, in Confessions of a Clinical Trial Junkie: "I like to call myself a trial junkie because I think you get the best care in clinical trials, and I think that it's the cutting edge care."

* The Bob Bové Neuroscience Institute at HonorHealth in Scottsdale serves as the HQ for a lot of clinical trials in this area. For my old clinical trial, I traveled 46 miles round-trip to this facility 15 times during a 9-month period, and received a $151.50 food+mileage allowance, plus a $50 per-diem stipend, for each 2-hour visit. There were EKGs, BPs, various iPad questionnaires, strength & vision assessments, weight & breathing measurements, and blood & urine tests. (I always had trouble producing enough pee. Shy bladder. Can't piss under pressure. 😉)

* The prospective new clinical trial would pay only a $100 stipend. No food or gas. Cheap bahstids. 😉

Wed05Aug2026: 10-minute telehealth Zoom call with the old clinical trial's head neurologist: $533.40?!
Nice work, if you can get it... 😉 (Medicare paid a big chunk.)

* The latest proposed treatment for my MG would leave me open to gonorrhea. All the downside of sex, with none of the fun. 😉

Fri21Aug2026: I lost two neurologists in the last week! Scary stuff, for a guy with Myasthenia Gravis. When you have MG, you need a neuro for prescriptions, and for treatment during "exacerbations," or crises (choking, paralysis, convulsions). #1 was the head honcho of the old clinical trial, and #2 was my "safety" neuro, the doc who diagnosed me a year ago. #1 provided neuro services while I was in the clinical trial, but as soon as I discovered the experimental medication was not working for me, he bailed. I still have to do two exit interviews, to provide the Swiss Overlords (pharmaceutical company) with their endpoint data, but #1 won't give me the time of day anymore. So I emailed #2, and discovered he had left the group practice where I found him. He's now "practicing in hospitals in and out of state." In other words, he's on the lam. Weenie. 😉

* Whew. I now have referrals to two new neuros. But it takes FOUR MONTHS to get an appointment. 😉

Fri04Sep2026: Waiver. Exception. Under the wire. Saved by the bell.
Last week, I was accepted by Vor Bio (see Beantown Boss, below) for a September 8th screening visit into their Telitacicept clinical trial. It was supposed to be the LAST DAY for recruiting. They were originally going to make me wait three months after the Iptacopan trial, but somehow cut it down to six weeks. Vor said they "waived part of washout period since previous study has a very short half life." Apparently, I was also a good little guinea pig. 😉 But HonorHealth called this morning, and said Vor was set to close their recruiting TODAY because of high demand. My wife and I rushed out the door and had already driven the first half-mile of the 46-mile round trip when the cell phone rang, telling us to wait 'til Tuesday. Vor had agreed to stand by their waiver. September 8th will (hopefully) be a big day for me. Yowza. The Mestinon-triggered diarrhea was already threatening to blow my cover. 😉

* VorUpstreamMG.com - Because it is at the top of the cascade, blocking or activating an upstream target alters everything that happens after it, often creating a widespread or systemic effect throughout the cell. (Telitacicept was created in a Chinese laboratory using recombinant DNA technology, combining human protein segments. It holds FDA Fast Track and Orphan Drug designations to accelerate its clinical development.) Downstream or targeted biological treatment agents work further down the immunological pathway to reduce pathogenic autoantibodies or block inflammatory damage at the neuromuscular junction.

Tue08Sep2026: Anikó and I drove into Scottsdale for the Telitacicept trial screening. I found this Fierce Pharma article to be compelling. RemeGen, the Chinese company that created Telitacicept, stands to make four BILLION dollars on this deal, and everyone thinks they got rooked. Other publications are describing this drug with the magic "R" word. Remission. Google says: "Up to 80%–86% of refractory or generalized myasthenia gravis patients achieve minimal symptom expression (MSE) or minimal manifestation status (MMS)." In as little as 12 weeks!

* Vampire Alert!
I'm being screened for a new MG clinical trial.
In the old clinical trial, my blood draws were simple.
They would normally involve two or three vials.
Four or five, tops.
But now, the rack looks like this. 🩸😉
UPDATE: The phlebotomist just corrected me. The rack actually contained 15 vials, not the 14 shown in that stock photo. My bad. I must've been woozy from the lack of blood. 😉

* Odd Trivia Fact - the Telitacicept study has an app...

* I emailed a friend in Denmark - "I just hope the gene-spliced recombinant ingredients of this injectable Chinese hellbroth didn't originate in some tube-nosed bat or contagious pangolin at an underground wet market in Wuhan. 😉"

* CAR T cell therapy seemed too risky for me. Little did I know...
Novartis pauses eight CAR T trials, including one for MG, after three deaths.

* UPDATE 10Sep: Apparently, it's true - I was the last patient to be screened for the Telitacicept study.

* "Beantown Boss" by yours truly, using ChatGPT. The HQ for the Telitacicept clinical trial sponsor, Vor Bio, is located at 500 Boylston Street in Boston Massachusetts.


Fri25Sep2026: I was just notified that I've been officially approved for the Telitacicept clinical trial! The PK (Pharmacokinetics) assay profile (which takes about four hours) will be performed on Monday.

Mon28Sep2026: Things You Learn At The PK Assay - The four main types of medical injections are intramuscular, subcutaneous, intravenous, and intradermal. Telitacicept is a subcutaneous injection (SubQ, self-administered under the skin, 45°-90° angle) into the abdomen, thigh, or upper arm.

* Side Note #1 - Faw down, go boom?! Meme: 4 neurologists & not one said that falling down was an MG symptom. But after 4 broken bones in 6 months, I figured it out 4 myself. 🦴🦴🦴🦴🤡

* Side Note #2 - A crown recently fell out of my mouth. It was chilling, when I remembered what happened to Dr. Katie Amatruda.

* Side Note #3 - The V.A. (government agency that deals with military veterans) considers Mestinon (pyridostigmine bromide, the drug prescribed for my MG) to be a Toxic Exposure. So I take this poison every day, and then I sh*t. Not just regular pooping, but explosive, uncontrollable diarrhea. And then I have to take another prescription drug to slow down the crapfest. It's a lovely way to go through life. I'm getting really proficient at predicting the early warning signs of a diarrhea explosion, so most of the time I don't need the diapers. But when I need 'em, I need 'em, so I wear 'em all the time. F*cking humiliating.

* Side Note #3(S) - Sheeyit: The Guardian's comprehensive history of runner's trots ('mechanical jostling of the intestines'). Taylor Knibb, 2024 winner of the Dubai T100 Triathlon, famously commented to a camera operator: “I just sh*t myself … so can you not get my a**? Thank you.”

* Side Note #4 - Big week for Li'l Alan... he's coming out of retirement!:
Monday, self-collected blood draw for AminoChain.io @ home, 20 minutes, $50.
Monday, PK for HonorHealth @ Scottsdale, 4 hours, $100.
Tuesday, blood draw for HonorHealth @ Scottsdale, 10 minutes, $100.
Wednesday, blood draw for HonorHealth @ Scottsdale, 10 minutes, $100.
Friday, injection research study for Fieldwork.com @ Phoenix, 60 minutes, $360.

That's MISTER Pincushion to you. 😉

Labels: mg