[John G Fay]

Hey Paul,

I’m late to this thread.  My MG specialist is at Mass General, Neuro-Muscular Services.  They have been treating me for three years.  Mestinon and Cellcept.  You live near Boston.  See if you can see them if you are still having issues.

My Primary care doc diagnosed me in one visit, ordered blood work to confirm and referred me to MGH.  I live 75 miles away.  I feel fortunate reading your initial experiences.

I hope you have success and wish you the best.

John

[John G Fay]

I was given Azathioprine after a period of time on 20mg of prednisone and 60mg/day of mestinon. My dosing increased every two weeks and after 5or 6 weeks I went to the ER with a fever of 105.9.  I was in for three days and had every culture, blood tests, scans and tests available.  They found no infection and determined it was the Azathioprine.  I have been on 2000mg of Cellcept since then. I am late onset as well (age 65 three years ago)

[John G Fay]

Thanks for this great thread.

I see my NeuroMuscular doc in 10 days.  This third vaccination will be my primary concern.

I was diagnosed with MG in October 2019 (65 yrs old).  I had Covid in December 2020.  Mild case, headache, cough, fever, loss of taste and smell. Lasted 10 days.  I was taking 20mg of prednisone daily and 180 mg of Mestinon at the time.  January my doc started me on Azathioprine (increasing dosage every two weeks) until I had a severe allergic reaction in February (3 days in the hospital).

5 days after I stopped taking it, I had my first Pfizer shot.  Second Pfizer shot end of March (on 20mg of prednisone and 180 mg mestinon). No side effects either time.  Not even a sore arm. I do not know if I have any antibodies.

I started CellCept (1000mg daily) in May.  Most articles I have read regarding mycophenolate mofetil and the vaccine is that it inhibits a good immune response (@32%).  Some suggest going off for one or two weeks before and after.

I am anxious to hear what my MG doc has to say and I will come back to this thread and let you know how it goes. Good luck with this everybody.

[John G Fay]

My diagnosis was fairly straightforward.  I had twitching left eye lid, upper and lower. Would have thought nothing of it except it was continuing for 3 weeks.  Went to my PCP and saw the PA.  She had me do some facial exercises and did the “cold compress” test on my eyes.  She ordered bloodwork that came back positive and referred me to the Neuromuscular Services at Mass General.  The docs there confirmed the MG and put me on 60mg/day mestinon.  I had a chest scan too that was neg. for a tumor.  I had a 6 month follow-up scheduled but I began to experience slurred speech and some chewing weakness, no swallowing issues. They got me in for an exam and added 20mg of prednisone/day to the mestinon.  I still take both and currently take 1000mg /day of Cellcept (not a fan) after 2 months.  Before I went on the Cellcept, I was on an increasing dosage regimen of azithioprine, but after 5 weeks had a severe allergic reaction to it (high fever, 105.9 and 3 days in the hospital). The docs switched me to the mycophenolate (Cellcept). I’ve been taking it for 2 months. My legs feel like logs.  Jury’s out, but I agree with being your own advocate and this forum is helpful as is the MGNews website. Thanks for hosting.

[John G Fay]

Jonathan A, thanks for the input and follow up.  I am going to discuss Cellcept at my next Neuromuscular visit in Sept. I’ve only been on it for two months and have been told it can take up to two years to show effectiveness. They will be discussing an increase in Cellcept to get me off the prednisone. I am not sure now if I want that.   Many of the side effects of mycophenolate seem to be similar/mimic MG symptoms.  I cannot differentiate if my MG symptoms are worsening or it’s the med.

Have you seen this article from NIH?:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646649/

Any thoughts, anyone?