So far so good on the Mayo Clinic Acthar dose trial

My husband is taking his daily injections of Acthar since early November, no side effects so far. It's too soon to tell if this drug is helping, but all his muscles remain strong (except his tongue), and his breathing is good (FVC 80%)! He will be coming up to his two year anniversary of diagnosis, and has probably shown symptoms for nearly three years. So at this point we are very happy with the slow progression and hope this Acthar will slow it more. Who knows, he has also taken Rilutek (now Rilizole) since diagnosis and perhaps that has helped, too. He still plays a 9 handicap golf game (senior tees) and wants me to ask if any PALS on the forum still play golf. It's one of the things that really keeps him going. Not being able to talk or eat is tough on him. But we count our blessings everyday!

Played golf until last November. poor balance now