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6 years and counting, anything, any ideas are welcome!
I have had gMG for six years and most recently in Aug of last year 2024 my wife had a knee blow out and I was her sole caregiver and she had a cast on, from hip to sole of left foot. she was bedridden the Dr said for six months. That meant I had to get her a hospital bed and change her myself and care for her exclusively. Long story short, i used all my energy up and ended up in ER and two weeks in hospital in Crisis Nov 24. Every other day of PLEX Treatmetnss seemed to work and my sons came from another state, took her to their place and stepped up and took care of her for/with me and their whole family stepped up. They were/are wonderful. I am a Viet NAm Vet 450% disabled. But, as time went on, I did too much still and had another Crisis in Feb 2025 ans went to another hospital in DE. This time the PLEX did not work and I was 4 hours form my neurologist who, left practice for health reasons. My search for another Neurologist who was familiar to gMG left me in a tough spot. She started me on PLEX anyway twice a week and 1000mg of Cellcept twice a day with six times a day on mestinom tabs. No help. Neurologist says its the two crisis’s so close together, I have really set my system back, it will take awhile be patient? Continue! We will monitor the twice weekly PLEX and bloodwork. Its not working,, two months, I am about ready to fo into another crisis, family is still helping, wife is getting better, cast is off and she is walking a few steps expect full recovry for her. I am 75, she is 80 years old. Any thoughts? any ideas. I have been REFRACTORY for four years now. Had regular Veit NAm issues with Agent ORange, bladder cancer, COPD, heart down to 38% capacity, other issues. Any ideas? HELP! I have run the treatments, IVIG, PLEX, PRednisone, Rituximab, Solaris, Vvgart, most of other treatments in six yeats, but nothing seems to work. Fritz
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3 Replies
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Wow, you and your family have been through the wringer. Until I reached the end of your post, I was going to suggest Vyvgart infusions (once a week for 4 weeks) every couple months. For me, it’s a miracle drug. Did you try a similar protocol?
Outside of this, or the same protocol for IVIG (I used Gammagard), I’m at a loss. I hope you find something that works for you. I applaud you for your service; for all you’ve been through. It did my heart good to hear of how your family stepped up to the plate when it was needed. You must have been a good father.
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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.
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It took 3 crisis visits in the hospital on plex and a port for outpatient plex to finally come up with something that works. Seems for us tough cases it’s usually a combo of drugs. Cellcept takes close to a year to work so I started it along with plex first once a week. Then every other. Went back on Vyvgart which also wasn’t working great. When the cellcept finally kicked in that plus the Vyvgart started working. I was shocked and thrilled. Down to 3 on pred as well. Before the cellcept a week of Vyvgart didn’t help. Now with it I can go the 4 weeks off. So try a mixture until something kicks in. Prayers sent
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