I’m piping in here as well. I’ve been episodic since 2008 and was very excited when Emgality was approved. I go into cycle every 1-2 years, and while my cycles began as a 6 week period, over time they have lasted months and been difficult to shake (some of that is my fault, as I am generally impatient with verapamil and prednisone due to the side effects, and trying other medications has historically made me sicker).
I went into cycle in October 2019 and immediately began Emgality. I took it for 3 months with absolutely no noticeable side effects, and by mid January of 2020 my cycle was gone. I counted that as a victory and was delighted. However, I started shadowing again in July and restarted Emgality. I took it in July, August and September. By mid September I noticed that my digestion had completely stopped and I was gaining weight. By beginning of October, my cycle had started anyway. I stopped the Emgality and have been fighting since October to put this cycle down with prednisone and verapamil. I recognize the Emgality helped me get rid of it last time, but this cycle came unusually fast, had lasted unusually long, and is behaving strangely (side shifting, hits separated by days, odd facial sensations). I attribute all that to the Emgality so am hesitant to take it again.
I’m very curious to hear others’ experiences. The docs don’t know anything because the drug is so new. We’re not going to sort this out unless we share it on the forums.
thanks