Marvin Yudenfreund

I received Retuxan (each treatment consisted of two infusions a week apart) at 6 month intervals for a couple of years, and now as needed.  No discernable side effects.  It works great for me, along with a 3X/d dose of Mestinon.  Because it is highly immunosuppressive, I took a 6 month hiatus from it to get my immune system to the point where th…[Read more]

I’ve had gMG for 3 years.  Had 2 Retux infusions and passed up on my third one because of the introduction of Covid vaccines.  Got all the Covid shots plus 2 Evusheld shots.  The Retux in combination with Mesthenon worked great.  But over time, fatigue plus a little ptosis became apparent, so my neurologist suggested another set of inf…[Read more]

I strongly recommend Evusheld for those gMG patients who are immune-compromised.  Even though it’s been a while since my last Retuximab infusion, I got my first Evusheld “butt-shot” in March, and I am scheduling another one at the 6 month interval in September.  No side effects, and NO COVID!

I was fortunate to have responded positively to the Moderna vaccine with a positive Covid titer 2 weeks after the first series.  I got a double shot of Evusheld (so I didn’t have to return for a second shot) in March.  My family physician has ordered a second Evusheld treatment in September because she (an infectious disease specialist) said t…[Read more]

Hey Sawyer, your description seems to indicate that you might need an academically oriented neurological team that is aware of the newest and most effective MG treatments.  High levels of Prednisone for long periods is not the best treatment option.  If you’ve been reading MG News, you may have seen new drugs introduced by Argenx and others.  I wa…[Read more]

Haven’t seen any literature on it, but I’be been taking lecithin for a while.  Lecithin is a precursor to choline, needed for the production of acetylcholine that transmits nerve signals to muscles.  Studies also suggest that lecithin could inhibit onset of cognitive disorders.

I got diagnosed at the onset.  I saw my surgeon six weeks after spinal fusion surgery.  At the visit, I experienced severe ptosis.  He looked at me and told me to get my ass to an ER asap.  At the ER, the physician on call punched my symptoms, including sudden swallowing difficulties and blurry vision, into his smartphone and diagnosed the MG.…[Read more]

MS is a snowflake disease.  I have a 12 oz homebrewed beer every night, a glass or two of wine with a celebratory dinner, and a shot of tequila or Scotch on occasion.  The only problem I’ve had was a bit of insomnia after a couple of glasses of wine.

My last Retux infusion was last July.  My neurologist ordered a CD 20 count on May 24, and it was still very low, indicating that the Retux was still working.  I guess I’m pretty lucky to have received a strong autoimmune response to the Covid vaccine, while maintaining excellent CD 20 suppression.

Like Doug Young, I’m a new member and this is my first post.  I’ve had gMG for 2 years, and my treatment consists of daily Mestanon and Retuximab infusions every 6 months.  My last Retux infusion was a year ago.  With the approval of my neurologist, I passed on the scheduled January infusion because I wanted as much time as possible to ellapse be…[Read more]