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Hi, my specific question is about what others have done after the first 4 Vyvgart infusions. Luckily, I was taken taken off Cellcept (3000 mg a day) in April at my request as I had GI side effects and severe bruising and bleeding that came way too easily if I scraped or bumped any part of my skin. THAT ALONE made me feel so much better! Wish I had tried sooner.
History: Diagnosed positive in Dec. 2019 at age 77, IVIG twice monthly for 15 mos., plus Mestinon, Prednisone and the Cellcept. I started the 4 Vyvgart infusions in June, finishing July 8. NO side effects at all but warned to hydrate, hydrate which I did. Now I am trying to stop Mestinon so skipped all doses today and doing ok so far. Noticeable signs with slightly more trouble pronouncing words..I can live with that. Still nap some days but often 20 minutes does the trick. However I am still on Prednisone 5 mg., instructed by my Neurologist to wean off that after one more round of Vyvgart in 5 weeks. Someone else said what I construed to be is that Vyvgart decides how much you need for the second round, not your Neurologist. Here is where I am confused. She says Vyvgart has to work, how well depends on how sick you are. I freely admit that I think I am not as sick as most now, but certainly was in the beginning. Had a crisis within 3 weeks of diagnosis, 12 days in hospital, 8 of which in ICU. Slept my life away for months until I got regular IVIg, and then I improved. I’m sure the 60 mg. of prednisone had alot to do with that also , but since I have fairly severe osteoporosis, she started tapering down as soon as she could. To the person asking about Prednisone, I only began to feel better when I got down to about 10 mg and could sleep again more normally.
Hope all this helps someone and also hope for more feedback on what others are doing post first 4 Vyvgart infusions.
Thanks.