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I’m really sorry to hear how difficult your journey has been—it truly sounds overwhelming. You’re carrying so much, and I just wanted to say you’re not alone.
I also have refractory MG, and I’ve been through most of the same treatments. I also had a stem cell transplant, which was an enormous undertaking. It’s actually been really successful for MG patients, but unfortunately it didn’t work for me. I think it’s typically only offered to younger people though.
Most recently, I tried cyclophosphamide. It’s an older chemotherapy drug—a bit of a sledgehammer approach. It can be really effective, but it’s also a tough one in terms of side effects. I ended up having a toxic reaction and couldn’t continue, but I did notice some improvement before that.
Just wanted to share in case it’s helpful to hear from someone who’s been down a similar road. Wishing you strength and better days ahead.