-
My daughter was diagnosed 3 years ago at the age of 21 with MG, I’ve had to be her patient advocate. At one point, before diagnosis, she was having a lot of breathing problems and found a supplement containing 5-Loxin (leukotriene inhibitor) and Salicin (prostaglandin inhibitor), both anti-inflammatories, to be a miracle for her. Which makes sense, because MG, like any autoimmune disease, is attacking the body and generating inflammation.
Her MG doctor explained to us that when the lung muscles are affected, symptoms are worse when one is asleep. When one falls asleep, all the muscles in the body become paralyzed except for the diaphragm. When one is awake, there are other muscles that help with breathing, so symptoms may be less when one is awake. Many MG patients, including my daughter, benefits from a BiPAP machine at night. CPAPs don’t work because they blow constant pressure, the BiPAPs back off and let the body exhale. While we were going through the insurance circus of getting a BiPAP, she was able to get by with oxygen supplementation during the night. She has always been fine during the day.
As for MG, it’s not just “its own thing”. It should be viewed as being part of an auto-immune disease “spectrum”, all related by the same problem of mis-programmed antibody producing immune cells, with different mis-programming for different autoimmune diseases. Not surprisingly, treatments are all very similar. Different drugs for different autoimmune diseases can significantly and merely be a result of the FDA approval process, not actual efficacy.
As the immune system is designed to react locally, not systemically (if you smash your toe, your thumb is not going to swell up), MG symptoms can begin with local symptoms like ocular, swallowing, etc. Many non-MG-expert doctors go by textbook symptoms and may miss things like breathing problems. My daughter’s started in her hips and knees. But I read somewhere that ocular MG may evolve into generalized MG in about a year.
So the goal of treatment is to reduce the production of those nasty auto-antibodies, whether by prednisone, DMARDs, biologics, IVIG, Plasmapharesis or thymectomy. Mestinon is just a band-aid – it does not reduce the antibody attack but merely magnifies the nerve/muscle communication to reduce symptoms. While Mestinon is a useful tool in the toolbox, MG should never be treated just with Mestinon.
End of spiel.