How is mestinon supposed to help?
Hi all, recently been diagnosed with mg through achr positive blood tests. I've been put on 60mg mestinon 3x a day and I'm not sure how much it is supposed to help.
I have seen a great improvement in my eyes, they barely droop and they don't hurt from wanting to close all of the time anymore (though sometimes I do still get this), it has also helped with my breathing and the wheezing sensation (again, very minimal now) and i don't get the feeling of food being stuck down my throat as much anymore.
But I still feel an amount of limb weakness, I don't feel so heavy anymore when I'm walking unless it's a long walk, but i still struggle with repetitive movements such as brushing my hair or teeth, lifting water jugs, etc. I took my daughter out to london for her birthday last month, and it knocked me for a couple of days
Im completely new to all of this so im not sure what's normal for treatment and what isn't 😅
Hi Violet,
Mestinon is the normal first treatment for newly diagnosed AChR antibody MG. It works by flooding your neuromuscular junctions with acetylcholine, the messenger chemical your muscles need but your antibodies are destroying. While it does not address the root problems of MG and is considered a stop gap medicine, it is very fortunate that it works well for you. It means you can get some relief from your symptoms during the few hours each pill is effective. It is the first step toward getting your MG and your life under control. I will never forget the wonderful relief I got from Mestinon (pyridostigmine) years ago when I first tried it. It was so wonderful discovering there was an inexpensive drug that worked and allowed me to live a more-or-less normal life, driving, shopping, going to movies and events.
Ahead of you are many months of drug trials as your doctor seeks a medication that actually suppresses the production of the antibody. It will ultimately replace Mestinon and eliminate the up-and-down roller coaster of Mestinon. In the meantime, Mestinon is your best friend, a miracle drug that will moderate most or all your symptoms, most of the time. I was able to take it for 10 months until the immunosuppressant Azathioprine took effect.
My ocular problems went away in about a month and never returned. Some degree of muscle weakness and muscle tiredness must be expected. There is no cure, but you can learn to live comfortably with your condition, and lead a happy, fulfilling and productive life. Read everything you can and get yourself familiar with MG. It will be your passenger for life.
Best regards.I should have also said, get lots of rest. People new to MG usually don't understand how much rest they need. Eyes sag, ache and close because those small muscles around the eye are exhausted. Close your eyes. Rest after every walk. Rest while brushing your hair. I used to wake up every morning feeling like I had a hundred muscle dollars. Making breakfast cost me five dollars. Walking the dog or going to the mailbox were a couple more. Washing dishes, folding laundry, etc. Every activity costs you muscle money. At the end of the day, I was broke and couldn't drag myself to bed. What I discovered was a good rest put a couple dollars back in the bank. A one-hour nap restored $10 at least. Good luck.
