Hi - I usually follow the epilepsy posts, but also have 2 other autoimmune diseases. For the GAD65 autoimmunity component, have tried everything...5 years of steroids, Cellcept, Rituximab infusions, 2 other types of infusions. I have stopped those either due to side effects or not doing anything. Last and final is Actemra injections, one every 2 weeks. Been on them since January. Don't see any difference. When I went to Mayo a year ago for a 2nd opinion on the GAD65 aspect, ruled out stiff person syndrome, and Mayo concluded there was very little chance of ANYTHING helping my situation. My neurologist wanted to try Actemra as my insurance finally approved it. No side effects, but no relief.

The home infusions were 8 - 10 hours a day, about every 6 weeks. Not fun but no real side effects, and no help.

Best of luck to everybody!!@!!!