Cellcept is being used to fight the pemphigoid you can ask your doc but not sure it will fight MG. Mestinon or pyridostigmine is best replacement for long term cause you can’t stay at that dose of prednisone. It a unique and fairly rare. Doctors don’t have a lot of answers yet. Hope you have more success

I have OMG diagnosed June 2021 prescribed MESTINON 60MG HALF TAB 3 X DAY FOR 1 WEEK. Graduate 1 Tab 3x day. I went off medication could not handle Diarrhea. Will have appt. with Neurology soon & see what they say. My condition has not changed. It is not real bad. I just have what I call a lazy right eye. I think I was born with OMG. The eye doctor FROZE MY EYES FOR 1 MINUTE. IT WAS A VERY PAINFULL TEST. Then I had blood tests to confirm OMG. When I took my medication I noticed the eyelid lifted almost immediately. It works very fast within 30 min. The doctor confirmed that is what it does. I have been advised to wear a medical bracelet incase I have a breathing problem & cannot communicate with medical staff. That way they know to go right to the source of OMG & bypass other tests that would delay the treatment I need. Won't take Prednisone because of side effects. Boomerang12

I’ve been on prednisone for 7 months, between 10&15mgs. Still having issues. Cellcept on deck. It’s amazing that there’s actually other people having a similar experience! So glad to have found these boards!

I went to Mayo Clinic in Rochester Minnesota on July 29th for Ocular Myasthenia Gravis. (OMG)
I’ve been dealing with it since January of 2021. This will be a lengthy follow up to my prior posts. I wanted to explain as much as I could about the entire experience, the Doctors and the Clinic to hopefully answer questions upfront anyone on this Mayo Connect might have. But please feel free to ask about anything.

Started at 9AM with 2 eye exams (Sensory Motor Exam & general optometry eye exam) before seeing Dr Tajfirouz, Neuro Ophthalmologist. My first appointment with a Neuro Ophthalmologist ever. I was seen by her fellow Dr Punja first. She too was wonderful and thorough. I met with 6 different people before my day ended about 2pm. Amazing how well they coordinated it all. 6 different appointments from 9:00am until 2 pm. The most organized care and info sharing I’ve seen between all doctors and technicians.

The EMG test (Facial nerve conduction study & Single fiber EMG) were both uncomfortable. With the results being consistent with Myasthenia Gravis (MG), or in my case, Ocular. (OMG)

Lab test area was very crowded, but they had so many lab techs the wait was very minimal. Amazing! I was tested for about 10 different things. Ruled out some things, but confirmed MG.

Two days later I got in to see Neurologist, Dr Nicolas Madigan.
Mayo was able to move up my original appointment with Neurology that was set for 8/14 to 8/1 while I was still up there from Indiana. The person at the 8th floor East desk called around to find someone who would reschedule and got me in two weeks early.

First I met with Dr Madigan’s associate fellow Dr Ito. Wonderful and very through.

After the examination, Dr Madigan decided to put me on a regimented drug program of Pyridostigmine (generic Mestinon) and Glycopyrrolate (to help with the diarrhea side affects of Pyridostigmine). Started those meds about 30 minutes after seeing Dr Madigan because the Mayo Pharmacy was another amazing example of efficiency. The doses were a ramp up. 30mg for a week, 60mg for a week and now at 90mg every 4 hours. I am seeing positive results for the first time in 4 years. And the Glycopyrrolate really helps fight the diarrhea. It’s been about 3 weeks now since I started treatment so I don’t know what the actual end game will be. Could be on current drug program indefinitely.
I was given Pyridostigmine in 2021, but diarrhea side affects, combined with no real precise drug use regimen, & no noticeable improvement, I gave up. Could be that since then the 2nd surgery for Ptosis to shorten tendon/muscles, lifted my eye lid enough to enable the Pyridostigmine to work. I don’t know for sure, but my symptoms have improved! Thank you Mayo!

Bottom line, I am a true believer in The Mayo Clinic. Highly recommend presenting your case and records if requested and putting in the effort to get an appointment.

On a side note, and because we went up early, we spent some time getting familiar with Rochester. This town and area had beautifully manicured landscape, was a wonderful place to explore if you are able and very clean. Great restaurants and food opportunities too. A lot of different kinds of art around town as well. We walked about 3 miles around town. Awesome place. Seems like a M-F , 8 to 5 kind of place. It was fairly empty on the weekend. Walking into the lobby my first day, there was a live pianist playing music in the lobby of Mayo/Gonda building, the building where I spent all of my time with doctors and testing. Front entrance had multiple wheelchairs for those in need and tons of people to assist.
Anytime we looked a bit puzzled about which direction to go or elevator to use, someone in the background noticed, and came up to us, asking how they could help. Amazing Place!