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 Everyone,
My father who is 70 yrs old is diagnosed with MG in OCT 2017. Initial few months were fine with slightly dropping of eye lid. Symptoms started to increase by February 2018. He went to crisis in Mar 2018 and still not able to come out of crisis. He had 5 doses of IVIG, 7 cycles of Plasmapheresis and 3 doses of Rituximab. With all these treatments he was able to breath room air with out ventilator and o2 support. But doctor was not able to remove tracheostomy and RT feed as his bulbar muscles are still weak. In july 30th 2018, he had second crisis and he is now hospitalized again.
Can anyone suggest what would be the course of action with refactory Myasthenia gravis?
Thank you.
All I can offer is the following paper (Jan2018)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791553/
MG can be tough but quite obviously, refractory brings many more complications. There may be others on here with personal experience/insight.
Peter
Welcome to the group. Sorry to hear your father is having so much difficulty.
Part of the problem is that by the time we are in a crisis, most of our voluntary muscle receptors have been destroyed or blocked. That makes us get very weak and takes time for treatment to let the destroyed receptors regrow.
The treatment is to stop the attack on the receptors by lowering the immune system and letting the receptors grow back. However if we get too far along, that is a real problem.
The iVIG,, PLEX and Rituximab should start working faster than most of the other treatments and so we can hope he will gradually improve. These treatments are generally what is used for refractory MG.
My opinion is that most doctors who treat MG start with the assumption that our MG will be a mild case and undertreat it until we get really bad, and then have to play catch up for months to get us functional again. I was 65 when I was diagnosed, went into the hospital in crisis within a few weeks while I was still getting a treatment plan setup. I was able to function by taking about 8 Mestinon (pyridostigmine) pills per day as high doses of prednisone slowed my immune system -- that took about 5 months to get me from a basket case to functioning. However, your father's situation is worse than mine was. However, with the treatments he is getting he should respond.
I had trouble breathing and found a CPAP (or BIPAP) machine was very helpful to ease my breathing difficulties at night and as needed during the daytime. Better than a breathing tube.
Let us know how he is doing. My own case was a year of bad MG and then much improvement with treatment and now remission for 5 years.
Good Luck
Russ