Answer Summary
Members rallied around someone hospitalized in a myasthenia gravis crisis, offering both emotional support and helpful context about their... Read more
Maybe ask about plasmapheresis as well - I had both when I had my crisis…
First — you're in the right place, and IVIG is a well-established treatment for myasthenic crisis. It works by helping to calm the immune system's attack on your nerve-muscle connections, and it can make a real difference during a serious flare.
Regarding your MG medications being paused — this can happen during a crisis Show Full Answer
The only thing that helps me get out of a crisis is plasmapheresis .I used to get IVIG every 3 weeks but it stopped doing me any good after a year on it Then the last one I got made me really sick. My doctor stopped it after that.
IVIG is really the only thing I have found that helps me at all. I have tried some of the newer medications (Ultomiris, etc.) and even plasmapharesis but they were not effective for me. Everyone is truly different so don't be afraid to try new (or old) options.
IVIG is a treatment from 2 decades ago. Better than steroids but still minimally effective. Find a new doctor. A Neurologist with 5 yrs experience with MG and other autoimmune diseases. The best newest treatments are Soliris, Ultomiris, Restiggo, Vyvgart, and Vyvgart Hytrulo. A couple newer ones are in the pipeline. Medicare pays for them. They are very expensive so you will have to suffer through the minimally effective treatments before your corporate/private healthcare plan will even consider approving one of them. You didn't mention your age but get on Medicare and a Medicare Supplement (Medigap) Your premiums will high but the treatments will be zero cost.