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Hello,
I began Vyvgart in February 2024. It took 3, 56-day cycles. So in mid July I woke up and realized how normal my life had become. In that time I stopped mestinon and was decreasing prednisone.
Unfortunately, in February, I experienced a terrible MG flare, requiring a rescue dose of IVIG. I was set back to where I had been the year before. By April I had another flare requiring a hospital stay and IVIG again. Recently in June, I averted the hospital with shortening my cycle to 49-days.
The question: is Vyvgart no longer working? The answer is yes. My mg-adl score went from 15 to 8. Ironically, I’m close to feeling like last July and experience minimal to no side effects. The problem is my doctor won’t adjust the dosing frequency (and fight insurance coverage) for my specific needs. She may force me to find another drug. This is difficult as it took 4 years to finally feel like I may have some quality of life. Actually, considering looking for a new neurologist that may fight a little harder for me.