I hope everyone is doing well (or as best they can). I was diagnosed as ACHr positive MG in 2013, had a thymoma removed and was put on mestinon, mycophenolat and prednisone. I did reasonably well for several years but symptoms returned and put me in bed for months. My doc then prescribed Rituxin which worked for about 6 months and then weakness started again.

I have now been on Soliris for about 1 year and it's working great. I'm not 100%, but I think being 90% is pretty amazing. I have no side effects except for a bit of fatigue immediately following infusion. My main worry is the cost of the drug. I have a great insurance plan, but you never know when that could change.

There are a lot of logistics to get on the drug. Your doc, insurance company and drug maker all have to be 'on board' and that took some time and lots of effort.

If I had to make one main point, Soliris can relieve MG. There is hope for those people who don't respond to 'normal' therapies. Don't give up!