Sunday, July 1, 2012

Waiting for Monarsen II

This is the medication I take for myasthenia gravis. It's called Mestinon.


Mestinon was state of the art medication in 1935. Do you know what else was state of the art medical care in 1935? 


It's been 77 years since there was a new medication specifically created to treat myasthenia gravis. FDR was president in 1935. There wasn't a new medication during the Truman administration. Or the Eisenhower, Kennedy, or Johnson presidencies. Nixon, Ford, Carter, Reagan, Bush, Clinton, Bush, Obama. 77 years, 13 Presidents.  Nothing new. How is this possible? Medicine has advanced so far since then.

I have an insulin pump. I have a Dexcom. I could spend hours reading about how the treatment of diabetes has advanced since 1935. I still rely on a 77 year old medication that works and doesn't work, that overdoses and under-doses and has so many side effects the main effect gets lost. Mestinon hurts almost more than it helps. I want something better.

I am waiting for Monarsen. The promise of a new medication that has no side effects, that works on the RNA level of MG antibody cells is almost too much to hope for. It's real. It's not available anywhere in the world. So I wait. I wait in the Twilight Zone where it is always 1935. 

Maybe I need to ask my pharmacist for a bleeding. Here's one with a bowl of leeches in 1935.



  1. I am waiting too. You are so right!!!!!!!

  2. Great post, Joy!



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