I have generalized myasthenia gravis: diaphragm respiratory muscles breathing problems; swallowing difficulties, extreme walking difficulties and leg weakness... blurring eyed tiredness, I'm on IVIG Gammagard Liquid plasma every two weeks; nurse comes to my home to infusion treatment - I have an gastric feeding tube implanted in my belly, I'm on pyridostigmine tablets... cellcept, prednisone. My neurologist wants me on Vyvgart - my fatigue is extreme also, I use a c-pap machine to help in breathing.
Itʻs effective but not long lasting. I am scheduled to do my 4th cycle but almost everyone who has been on it needs it by their 50th day. What happened to it working on the FC receptor and reducing the Achr antibodies even more? For many feels like our bodies have a rebound effect regardless. I hope Argenx is finishing up on the subcutaneous version soon.
I can't help but think a pre-treatment in the form of Plasmapheresis (or something similar) might actually prolong the efficacy of this drug in the system...
How is this medication in comparison to Mestinon? (I am Not a Fan of approved medication by the FDA, because they approve based off how their pockets will be “fatten”. Therefore I need to know how it works compared to other MG medications that are out already?
@@Snarkapotamus well their are books, that you may not have access to anymore. But look at the “Dallas Buyer Club” and “Dopesick” old and current doc unified.
When I switched from Soliris by my 4th infusion of Vyvgargt all of my symptoms were way worse. My doctor immediately switched me back to Soliris and IVIG. It took 6-9 months to get back to close to where I was before I switched. From what I've heard from my infusion nurses, none of their patients who had switched has seen any improvement changing to Vyvgargt and most had reactions similar to myself. I pray that anyone with MG finds something that makes their lives more pleasant. 🙏
