Has anyone tried Ultomiris ?

I started to write a book, but you didn't need me to unpack my baggage at your doorstep. My bad. I was formally diagnosed with gMG in July 2023. I previously had Ocular MG from 2014-2018. If did not respond really at all to the pharmaceutical's at all (Prednisone, Cellcept, Mestinon). I really self-diagnosed before the Doctor's figured it out. Long story short. I ended up initially on Cellcept, Prednisone and Mestinon. From my previous experience with Ocular, I suspected that I again would not respond well to pharmaceutical immunosuppressant medication. In NOv IVIg was added with a response the first time, but after that, I might get done or two decent days in between infusions. Being a rather impatient patient, I was unhappy not seeing any improvement. I did some research, and because I also had my spleen removed because of an auto accident, I asked if we could try Vyvgart Infusions. I did. For me, it was the most rapid decline imaginable. I went from being mostly functional to wheelchair bound within 6 months. Unfortunately, it also led to multiple extended hospital stays from October 2024 thru to May 2025. At some point, during a stay in January while I was basically unconscious, I was given parapherisis and a couple of days after 5 plasma exchanges, I woke up. Long story short (again, jeez I am terrible!) I felt amazing. You have to take that with a grain of salt, because at the time I was very near death. I continued with parapherisis through the summer. I was moved off of parapherisis and started Ultomeris in the fall. I will have my third maintenance dose on Jan 7, 2026. I was terrified to start it, because the only success I have observed at all came from blood products (IVIg & Plasma Exchange). They say you should have some idea of its effectiveness at 12 weeks, but the better indicator is 26 weeks. So that puts me between those two and you know what, I am cautiously optimistic. I have not gotten worse. I would say I have at least maintained and probably improved. Thank God. It is the only man-made treatment that I have responded to positively. I am still in a wheelchair and I fear it will be my companion for life, but I would try Ultomeris for sure. It works on a totally different strategy than other immunosuppressant drugs (except Solaris, same drug but infusions are every 2 weeks). Best of luck to you and keep working at it. I think you can win. Sorry for the long post. I shouldn't have done that.

I was diagnosed last January. I've been on ultomiris for about 7 months and prednisone . In the past IVIG helped for a week to 10 days .. before i could start on ultomiris I had to take meningococcal vaccines but I can tell it's working and have been able to tapper down to 15 mg prednisone.. you go every 8 weeks for the infusion