[Marvin Yudenfreund]

I understand your concern for osteoporosis. Too bad your neurologist is unfamiliar with the groundbreaking work done back in the 70’s by Dr. Charlie Pak at the General Clinical Research Center at UT Southwestern Medical School in Dallas. He demonstrated the effectiveness of calcium citrate as an osteoporosis preventative – it’s called Critical, and you can get it or generic equivalents everywhere. Naturally occurring calcium, calcium carbonate, has an extremely low solubility product, rendering it virtually ineffective as a bone-thinning preventative.

[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 the Covid vaccines would be effective.  A positive Covid titer 2 weeks after completing my first vaccine treatment was positive.

[Marvin Yudenfreund]

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 infusions.  Just completed my second infusion last week.  I’ve experienced no negative effects from Retux.  The only cautionary note is that this stuff is highly immunosuppressive, so keep away from superspreader events and mask up during the Covid/flu/rsv season.

[Marvin Yudenfreund]

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!

[Marvin Yudenfreund]

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 that it was only effective for 6 months.  Didn’t suffer any ill effects from the Evusheld, other than a sore butt.

[Marvin Yudenfreund]

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 was treated successfully with Rituximab.  I take 60 mg Melatonin 3x/ day.  My side effects include runny nose, diarrhea, frequent urination.  My neurologist prescribed 1 mg glycopyrrolate 1/d, and it has really helped.  Good luck!

 

[Marvin Yudenfreund]

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.

[Marvin Yudenfreund]

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.  Spent 4 days in ICU, was given Mestinon, and was released when swallowing proved.

Four days later the swallowing problem reappeared.  I went to the ER at UCSF Medical CTR in San Francisco.  I was given 3 ivig infusions, and, after a couple of days, was preparing to leave.  At night, my ability to breathe ceased.  Pushed the emergency button and wrote on paper that I needed immediate intubation.  Got Code Blue and rushed to ICU where I was placed on assisted breathing.

Spent 2 weeks in ICU and was released with an ng tube.  Used that for 6 weeks and regained my ability to swallow.

I did a 4 week taper off Prednisone, received 3 infusions oh Rituximab at 6 month intervals, and currently am doing very well.

[Marvin Yudenfreund]

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.

[Marvin Yudenfreund]

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 before my Covid shot.  Received 2 Moderna shots, late Jan. & early Feb.  After 2 weeks, I had a blood test and got a positive antibody titer for Covid.  It works!

My friend takes Retux for rheumatoid arthritis.  She didn’t halt her infusions.  She got her 2 Moderna shots; after 2 weeks she tested negative for Covid antibodies.

Hope this helps all who seek to acquire Covid immunity.

[Marvin Yudenfreund]

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.