Waiting for Monarsen

As a person with myasthenia gravis I rely on a drug called Mestinon to help me function. Mestinon is a little bit like insulin because neither medication is a cure. They help, but cannot heal what's wrong.  Mestinon helps muscles and nerves communicate. Since the rest of the explanation of how Mestinon works uses imaginary words like acetylcholinesterase and cholinesterase, I'm going to skip that part. I'll refer you to the Mayo Clinic instead.

The first treatment for MG was discovered by Dr. Mary Walker. She had a patient who was suffering from myasthenia gravis. Dr. Walker noticed her paralysis symptoms reminded her of curare poisoning. Since the treatment for curare poisoning at the time was physostigmine, Dr. Walker wondered if it would help her patient with myasthenia gravis. She injected her patient with physostigmine and her patient... well, it must have looked like this:



That dog has MG. Notice how quickly the symptoms reversed? That was a diagnostic drug called Tensilon, which is similar to the physostigmine Dr. Walker used on her patient. Now this was a huge advancement. A life saving advancement. In 1934.
Since 1934 medicine has advanced in thousands of directions. Hearts are transplanted from a cadaver to a living breathing person. Doctors can scan our brains and watch us think. We live in a world of cell phones and iPods. Of space stations and jet planes. In our modern world everything imaginable has advanced except for the treatment of myasthenia gravis. Mestinon, the pill form of physostigmeine and the only medication created specifically to treat myasthenia gravis was created in 1935.

Common side effects include:

• Sweating
• Diarrhea
• Nausea
• Vomiting
• Abdominal cramps
• Increased salivation
• Tearing
• Increased bronchial secretions
• Constricted pupils
• Facial flushing

That's how the experts list the side effects. My 15 years of experience would put it slightly differently. Mestinon makes me feel hot and sweaty, slightly nasuated, gives me muscle cramps, makes me cough, makes me feel like I have to go the bathroom. In short, Mestinon sucks. It sucks less than MG. But, it still sucks. It's a 77 year old medicine. Who would want to turn back the clock 77 years for their medical treatment? Anyone? I'm waiting for a new treatment.

What if... What if there was a new drug for the treatment of myasthenia gravis? What if it was a replacement for Mestinon? It has no known side effects. It works better than Mestinon. What if it has FDA Orphan Drug status? What would that drug be called? A miracle? A dream? No. It's called Monarsen.

Monarsen is a replacement for Mestinon. I am waiting for Monarsen. Perhaps a new hope is coming for me. Just like it did for Dr. Walker's dying MG patient in 1934.