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I was diagnosed just over a year ago and that was when I went into a crisis and was put on a ventilator. After that, prednisone 40mg daily for about 4 months and IVIg while in the hospital. Weaned down off the prednisone down to 7.5mg by November but not without losing almost all my hair, getting the “moon face” and getting prednisone induced myelopathy. Then whamo-crisis number 2. Intubated again and toying with the idea of a trach since I wasn’t able to wean off the vent. Anyway, prednisone back up to 20mg, IVIg 5days in a row. I go for IVIg 5days in a row every month since Dec and have weaned down to 15mg of prednisone. We are now trying to space out the IVIg to every 6 weeks. The mestinon doesn’t really help me either-just makes me go to the bathroom. The IVIg does work for me tho! I hate the prednisone so much!!