-
After experiencing an MG crisis (hospitalized and treated with Plasmapheresis), I had IVIG for 2 months, then I was infused with Vyvgart. Had 2 rounds (4 weekly infusions) in 2023. The first went very well and I started feeling much better, strength and stamina restored, no more double vision or wonky eyes. About 2-1/2 weeks before the second round was scheduled symptoms returned. Less than 3 weeks after round 2, I experienced all my symptoms returning. My new neurologist recommended Ultomiris, which I started in April 2024. I did very well with improved strength, etc. but after my last session I noticed it’s not “lasting” so I am scheduled to get an increase in the dosage. Hopefully that will help. Long story short — I did much better with Ultomiris than Vyvgart. I’ve remained on daily Pyridostigmine throughout but with Ultomiris, I have been able to reduce the dosage. Small miracles. Only real issues I’ve had after Ultomiris infusions are severe headaches for about 2 days and breakouts – pimples, just like a teen again. 😕