[Jan58]

My day-to-day symptoms are managed with 90mg of pyridostigmine every 3 hrs while awake, and 15mg of methotrexate weekly. So I’ve only had IVIG when I’m in a major crisis and I’m already in the hospital. I’ve had headaches every time. My normal migraine meds helped, although they didn’t fully subside for a few days after. However, the last time I had IVIG, I ended up in “status migrainosis” meaning a severe intractable migraine. Plus, my labs were “off”. That lead to several days more in the hospital getting a cocktail of drugs. So in subsequent crises, I’ve had plasmapheresis (PLEX) which has worked extremely well with minimal side effects for me except for a little dizziness.

[Ari Maayan]

MG Dx 2016 both general and ocular. I have been getting IV/IG (2 consecutive days, 55gm 1st day, 50gm 2nd day) monthly as well as 240mg of pyridostigmine and 200mg Azathioprine daily. My symptoms are normally controlled. I get nausea after the IV/IG. Have had 5 myasthenic crises, twice coded, (respiratory only), once respiratory and cardiac both. Fortunately that time I was in the hospital at the time. When I have the myasthenic crises I am hospitalized, 8 days, with 5 days of IV/IG. This last time I was in San Diego when it occurred and was in ICU for the first 3 days in hospital. It was exacerbated by the fact that I had a serious bout of pneumonia with it. Now, even after 3 months, the pneumonia is hanging on.