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 there. I'm new to the community and wanted to poll the Myasthenia Gravis members about Rituxan. My dad was diagnosed with MG around Christmas 2014. IVIG instantly brought him back to normal and had a lasting effect of around 6 weeks. He spent most of 2015 on a steady diet of steroids but out of the hospital. His primary issue when he crashes is inability to swallow and a droopy eye. Mild fatigue. From the neck down he seems in control.
He crashed again just before Christmas 2015. The IVIG did not work this time. That's when they started the plasma exchanges, every other day for 5 days. By the 3rd or 4th session he regains swallowing ability. The hospital sent him home after the 5th session. He lasted one week and was back in the hospital, crashed again, unable to eat or drink anything.
Now they have him on rituxan. His first dose last Thursday went just fine. The day before that he had a plasma exchange. Sure enough, today he crashed again since it's been a week since the last plasma exchange. His schedule for Rituxan is supposed to be dose #1, then a week later dose #2, then a week later dose #3, then a week later dose #4, then not another dose for 6 months. He gets #2 this Thursday.
Is there anyone out there who has many months experience with rituxan, and also has swallowing symptoms with their MG, who can describe what they went through? Does the plasma exchange negate the benefit of the rituxan? How long does it take to start working, if at all? Is my dad ever going to be able to live outside the hospital again? This is maddening.
Thanks,
LB
He crashed again just before Christmas 2015. The IVIG did not work this time. That's when they started the plasma exchanges, every other day for 5 days. By the 3rd or 4th session he regains swallowing ability. The hospital sent him home after the 5th session. He lasted one week and was back in the hospital, crashed again, unable to eat or drink anything.
Now they have him on rituxan. His first dose last Thursday went just fine. The day before that he had a plasma exchange. Sure enough, today he crashed again since it's been a week since the last plasma exchange. His schedule for Rituxan is supposed to be dose #1, then a week later dose #2, then a week later dose #3, then a week later dose #4, then not another dose for 6 months. He gets #2 this Thursday.
Is there anyone out there who has many months experience with rituxan, and also has swallowing symptoms with their MG, who can describe what they went through? Does the plasma exchange negate the benefit of the rituxan? How long does it take to start working, if at all? Is my dad ever going to be able to live outside the hospital again? This is maddening.
Thanks,
LB
There are studies done on Rituxin and many people did not experience much improvement after the first cycle or second cycle but some did. Some saw a big change after the third cycle. It takes awhile given that there is a six month wait between the cycles.
Unfortunately he is looking at a long haul to getting better. There is depression to deal with when one feels so bad and other people just do not understand. So give lots of support during this time.
I'm confused about what exactly a rituxan "cycle" means.
My dad's schedule is one rituxan via IV each week for 4 weeks in a row. Then not another until 6 months later. At the 6 month mark, I assume the interval is then once every 6 months, not starting them weekly again. Perhaps I'm mistaken. I can follow up with the neuro doc. Can anyone clarify their rituxan schedules? Dezborme, when you say the "second round" of rituxan showed improvements, I'm not clear on how many infusions and how many weeks apart encompass "one cycle".
Thanks everyone, very much.