Went on Soliris in March 2019 after 19 years of mg. Have been on IVIG for about 15 years with mestinon and immune suppressant drugs. Have been able to stop IVIG completely and am doing the best I have done in years. I did have 2 mg crisis last year, 3 weeks in ICU with the first one and 4 months in hospital with second one (1 month in ICU and 3 months in rehab after I had to get a tracheostomy), I can't talk now because of the trach and I thought I would never walk again after being in a hospital bed for 4 months. Also, between the 2 hospitalizations, I had extreme pain in my low back to the point I could hardly do anything. I've had back problems my entire life and thought it was just another back issue. After 3 months of agony, I had a CT scan and MRI and discovered I had an infection in the spine at L3 & L4 and infection in the area around the spine. They put me in the hospital immediately and started heavy duty IV antibiotics which led to the 4 months hospitalization because for me, a hospital is no place to get rest. Instead I always end up with a mg crisis if I have to be hospitalized for anything else.

All this rambling is to say that I have been on a lot of treatments for mg over the years and Soliris has done more for me than any of the others. I am now on one 45 minute infusion every 2 weeks and hopefully this will work for me for years to come. I am 69 and have been retired for 9 years.

Good luck and I hope it works for you as well as it has for me.