Rare Disease Report

Mestinon and Other Ways to Treat Myasthenia Gravis

MARCH 21, 2018
Beth Stein, M.D. and Anaya Mitchell
Beth Stein, M.D., is the Chief of Neurology at St. Joseph’s Regional Medical Center, and works closely with the Myasthenia Gravis Foundation of America (MGFA).

Anaya Mitchell was diagnosed with myasthenia gravis (MG) in the Summer of 2013. She was 13 years old. Mitchell was referred to Rare Disease Report by the Myasthenia Gravis Foundation of America (MGFA).

In this video, the two of them discuss mestinon, steroids, and other treatment methods for myasthenia gravis. 



Stein: Unfortunately, there aren’t many clinical trials for drugs for myasthenia gravis. The drug regimens we used are based on physician experts, or based on our own experience with the disease and with patients. Many of the medications we use are used to alternate illnesses, and we have modified them for us. So, there’s no real consensus on how to treat and it’s really physician-dependent. There are expert consensuses on guidelines on how to treat, but every patient is different because their symptoms are different, and their symptoms fluctuate. Physicians have to address every patient differently and treat their diseases individually. The mainstays of treatment include something called mestinon, or oral cholinesterase inhibitors. That helps manage fluctuations, and it’s taken four times a day. That’s the mainstay treatment that we use initially, but it doesn’t work for everyone. After that, we move onto immune modulation because most of the diseases are autoimmune diseases. The immune modulation consists of steroids, or IVIG, or a plasma exchange, or other immune modulation agents that were designed for other illnesses. There is also a role of thymectamine in certain patients with myasthenia gravis which is part of treatment managements.

In terms of drug development, there are over 19 drugs currently in the pipeline for use and management and hope to help modify the disease. There’s even a vaccine currently in development to help modification of the disease.

Mitchell: Once I was diagnosed, I was immediately put on mestinon, which I call my “regulator.” I take it every four hours every day for just general function, like walking, talking, being able to eat, and things like that. I was also put on prednisone, which is a steroid that, I guess, gives you an extra boost to walk longer and talk longer, and things of that nature.

Stein: So, the landscape is always changing. There was actually a recent drug approval in October 2017, which was wonderful, for patients who were refractory with myasthenia gravis. Those are the patients who are hardest to treat, who don’t respond to the available armamentor that we have right now. Those drugs that we have work well for some patients, but there is a good 5-10% of patients who just don’t respond. And they’re our hardest to treat patients; they’re the ones who do the worst and really suffer the most. There’s a lot of drugs being aimed to treat those patients. It’s very exciting that there was a new drug approved; it was the first one in a while that specifically treats myasthenia gravis, which is wonderful.

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