What was the first treatment your doctor prescribed for MG?
Tell us how it worked for you. Did treatment help reduce symptoms? Did it bring any unexpected side effects? Your insight can provide valuable perspectives for other navigating similar journeys.
Generic Mestinon 60 mg three times a day.
Pyridostigmine 60 MG 3x day
I was first diagnosed in the hospital in March. I couldn’t swallow or speak and my eyelid was drooping. They first thought it was a stroke. Then diagnosed with MG. Went on mestinon with no help but was in crisis. Tried ivig for five day and nothing helped. Got on Ultomeris and immediate help. I’ve had three infusions and almost no symptoms except of course a little more tired than usual. I am also taking mestinon three times a day but I am weening off. It is a miracle drug I think.
7 months into this journey. After a few weeks of a droopy eyelid, lab tests confirmed MG. Neurologist prescribed Pyridostigmine (Mestinon) and stated with 1 30-mg pill daily. Eyelid resolved nicely, and by Day 3, I went up to 2 30-mg pills. Unfortunately, that is when "all h*ll broke lose". Horrible bladder cramping and retention, (requiring catheterization which lasted months until a surgical procedure corrected it). Discontinued Mestinon on Day 4, and was replaced with 10 mg prednisone. Cutting back to 7.5 mg daily. Eyelid still good, but some blurry vision. Remains ocular, and maintaining thus far!
