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...
I start Rituxan tomorrow for my MG that has now become "resistant" to plasma exchange. I'm wondering how soon after starting Rituxan I can hope to see improvement. The protocol is one dose every week x 4 doses, then probably once every 6 months.
Thanks!
Jen
Thanks!
Jen
The second-round was 6-months later; once weekly, for 2 weeks.
I stretched the 3rd-round out to 10-months later, and that was too long, as some of my bulbar symptoms began to return. Just this week, I finished that 3-round, once weekly, for 2 weeks. I already feel better, and my voice has returned to normal, and so has the minor diaphragm problems. My Neuro wants me to keep the 6-month schedule, for at least 2 more years.
That's my maintenance therapy: every 6-months, once weekly, for 2 weeks, for the next 2 years.
The first-round took about 18-weeks, before I noticed any decline in MG symptoms. During that 18-weeks and beyond - I was supported by once-weekly IVIG. By the time I reached the 2nd-round of Rituxan, I was noticing more of a difference in symptoms.
With the second-round, at the 6-month mark? That's when the MG symptoms really started to decline. I tapered the weekly IVIG; the last IVIG was March 1. I am currently at Prednisone 5mg, and will soon be tapering that to zero.
The point being: with your very first Rituxan I.V., you may not notice immediate relief of symptoms. Yet Rituxan seems to work quicker than Cellcept or Imuran. (My latest round of Rituxan, the 3rd? Maybe there is a cumulative effect, in blood-work?)
Do you think you might benefit from some IVIG, even once a month - until the Rituxan kicks in? If you do, check with your Neuro.
I didn't have a choice. It was Rituxan & weekly IVIG, for many months. I was very lucky, I had decent insurance, but still ran up some outrageous personal medical debt. The plus side to this medical debt? I also learned, that large medical providers, will work with patients on expenses. Not only that? Also, most financial organizations - even credit-reporting agencies - do not even take medical debt into credit consideration. That's useful, if you need a car loan, or a house repair loan - or any other sort of credit, which is so often a routine part of life.
Keep us posted! - Ross
** Sidenote for you Jen, and for everybody: If you can, get supplemental insurance coverage, for coverage beyond your basic policy. To use myself, as an example: my Medicare B is what covers both Rituxan & IVIG. I now also have a "Medicare B Supplemental Insurance, Plan A, Anthem BC/BS". Without this supplemental insurance, I had run up that major personal medical debt. With the supplement? All my IV-Therapy costs - are now covered. I am. Very. Very. Lucky.
Unfortunately? We read here, every week? That so many private health-insurers don't cover expenses at all - for any IV-Therapy. A crime. A real crime.
Thanks again - appreciate you taking the time to respond.
Jen