Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Yesteday, I saw a neurologist and had to really press to get an appointment. She performed a series of physical tests and we had a good discussion. She prescribed Mestinon and suggested I wait a week after tapering off Medrol (prednisone equiv.) to check my symptoms, before starting Mestinon. I only had the ocular MG symptons (drooping eyelid and double vision) and both are gone. My anti–acetylcholine receptor (AChR) antibody (Ab) test proved positive for MG.
As my MG symptons subsided, an old auto-immune enemy of mine (chronic idiopathic uticaria) came back with a vengeance. Does any of you have chronic idiopathic urticaria and myasthena gravis?
Most of us start with mestinon and then go to mestinon plus prednisone if we need more than just the mestinon. Tapering off of Medrol before starting Mestinon is probably an attempt to see if you are in the 15% who go into a remission. One problem is that it may take months from the time you stop Medrol before MG symptoms return (think of our disease as sort of everything in slow motion -- sometimes weeks and months for changes in treatment to show up)
Getting off of of prednisone type meds is not as easy as it sounds, as if you have taken it for more than a few weeks, you have to taper it down slowly or you may have problems as this med shuts down your adrenal glands, and they start up slowly--so adrenal gland insufficiency might cause you some problems.
If you haven't taken mestinon before, then you might read up on the side effects (the worst are digestive tract upset and diarrhea). Take them with food and if it really bothers, try some loperimide (Imodium) in the morning.
If a person without MG takes mestinon, they mostly notice the digestive symptoms (which we get too) and also twitches and muscle cramps.
It is odd another immune system problem came back while on Medrol -- as that suppresses the immune system for all antibody production. Most of us get opportunistic infections, fungi, etc, when our immune system is suppressed. You might check just to make sure what you have is the Urticaria, and not a rash from Medrol (one of the side effects), or not some other problem from immune system suppression.
Many of us with MG also have thyroid problems (the immune system attacks that too) and take thyroid meds.
Hope all continues to go well!
Good Luck Russ
I sure hope I’m in the 15% who go into a remission and hope the remission lasts a long, long time.
I’m tapering off the Medrol and will see what happens before starting Mestinon.
Mestinon side effects: digestive tract upset and diarrhea. DRAT! My bowels are already an aggravation since getting old. :o(
My uticaria episodes were under control for years using Atarax. One cause for urticaria flare ups is stress. I’m a kinda weinee when it comes to stress and the MG diagnosis did rattle me.
My lab tests indicate no thyroid problems.
Thanks for the well wishes. Best wishes to you as well.