» On 7/01/2026 12:00:00 AM Mountain Standard Time, Alan wrote:
Waiting For The Magic Pill To Kick In. 

During the past few months, it has become apparent that I was in the research study's placebo group, and my MG symptoms were getting worse. Much worse. So I was anxiously awaiting June 16th for quite some time. That's when I received my first dose of "real" iptacopan (tap photo to enlarge). I'm the first of the Scottsdale patients who's making the transition to guaranteed iptacopan, in the Open-Label Extension of this research study. Iptacopan is supposed to be a medicine that will clear up all the nasty Myasthenia Gravis symptoms and horrific side effects of the drugs I'm currently taking. Keep your fingers crossed! We should know more, in several weeks.

Iptacopan will lower my defenses against meningitis and other encapsulated bacteria. So the study organizers gave me three different vaccines, in six separate shots, over the last eight months, but they say I should wear a mask in any crowded spaces, just to make sure. (I got a couple of extra shots, Covid and flu, on my own.)

A friend asked: "You have to wear a mask? AGAIN?!" He was obviously referring to the bad old pandemic days. So I replied: "Yep, fire up the 1.21 jigawatts, Marty, and set the DeLorean for 2020!"

Monica Seles, the tennis champion who got stabbed in 1993, was diagnosed with MG in 2022 at the age of 48 and spoke about it publicly last summer. She has signed an endorsement deal with argenx, a Dutch biotech company, and is now the spokesperson (1:00 video) for their IV/self-injected MG drug.

Most of the new MG treatments (and there are a ton of 'em) involve a needle, which is why the Swiss Overlords are so eager to get FDA approval for their iptacopan to be used with MG. If MGers can pop a pill, rather than endure a jab, the whole game changes. Bigtime.

Iptacopan is currently FDA-approved to treat Paroxysmal Nocturnal Hemoglobinuria (1.5 cases per million people), C3 Glomerulopathy (2 cases), and IgA Nephropathy (25 cases). If the Swiss Overlords can add MG (150 cases) to that list, their profit margins become a LOT more interesting. 😉

Internet: "[Iptacopan] begins working inside your body within 2 hours of taking your very first dose. However, because it works at a cellular level to block the complement system, you will not feel it kicking in right away. It typically takes several weeks to a few months to see the full, noticeable health benefits."

But I'm gettin' antsy, d*mmit. 😉

My subsequent visit with the study organizers in Scottsdale was scheduled at the two-week mark, rather than the usual one-month appointment. After that, the normal one-month visit will be followed by a two-month interval, then three-months, then six-months. The six-month spacing continues until June 15, 2031. Theoretically.

Five years? I guess that means I need to avoid kicking the bucket until then... 😉

See also: adjustment disorder, upstream

Labels: mg