Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi group!
I have had MuSK MG since 1998. Treatments have included thymectomy (before we knew about MuSK stuff), IVIG, prednisone, Cellcept and even high dose cytoxan (reboot). That reboot got me several very good years, but now 6 years in I find my quality of life going downhill. I mainly have SEVERE diplopia and moderately severe bulbar symptoms. To make things more interesting, insurance has decided they've paid enough for my Gamunex (used for 15 years and am doing an external review to keep it) so I am kind of running out of options.
Now I see two options: PLEX or Rituxan. I live 100 miles from my treating neuro, and have HORRIBLE veins, making PLEX a not very attractive option. The fact that it doesn't do anything for immune system modulation is a bummer as well. So, Rituxan is suddenly a real option to me, and I'm trying to decide whether to try it.
My neuro, at a large teaching hospital and MDA center, says her protocol is one 375 mg infusion of Rituxan. That's it. She said the CD 19 labs are monitored and the infusion is repeated every 6 mos or as tolerated. That sounds very different from what I've read others receive, but she has about 8 years of experience with the med and has dozens and dozens of patients on it, so I guess it's working for her.
So, here I am, trying to gather courage to go through with this. I've read some old posts on here but was wondering if anyone would be willing to share some experiences with me, most specifically about the protocol you use. I'm *this* close to going for it.
Thanks so much for your time!
C
I am on rituximab infusion
The dose recommended for me was 100 mg once weekly for four weeks then once every three month
Over the last month i had IVIG infusion, 5 plasma exchange sessions and a thymectomy
I am now waiting my third dose of rituximab infusion and as per my doctor if i don't see improvement might increase the dose to 500 mg weekly
Good luck
Hope this information was of help
Wow, you've been through the wringer! Talk about a bad month! Have you noticed any improvement in your symptoms since going through all of that?
Keepsonablessin, I appreciate the support! Yes, MG is awful.
I have decided to proceed with Rituxan. I will see my neuro later this month for pre-labs and to discuss the protocol. She will actually be giving me a dose of 375 mg /meters 2 body surface area. One infusion per six months or as needed. I'm ready to do this as I have a vacation planned for this winter and I'd love to be able to see straight and eat the yummy food without gagging.
Anyone else have any Rituxan experience?