Replies to I’ve had MG for 50 years. I don’t know of any medications you need to avoid….

← Return to How do you diagnose myasthenia gravis?

Discussion

Autoimmune Diseases | Last Active: Feb 28 7:26am | Replies (36)

Comment receiving replies

@pmci

I’ve had MG for 50 years. I don’t know of any medications you need to avoid. Never came across any that worsened my symptoms. For me the 2 crucial positive things were having a Thymectomy early on and taking Mestinon, as much as I felt I needed. In daily life, it’s tough I know but try to avoid extremes - eg of emotion (eg anxiety), temperature (being too hot or cold), food (too much/too little). These seem to exacerbate symptoms. I wish you luck. It’s a drag isn’t it.

Jump to this post

Replies to "I’ve had MG for 50 years. I don’t know of any medications you need to avoid...."

Just Me | @brighterday | Nov 20, 2023

Thank you so much for your response, @pmci! I have been struggling with this for at least 7 years, but was only diagnosed about 3 months ago. I’m seronegative which I know contributed to the delayed diagnosis. Your advice about avoiding extremes is so helpful. I have definitely noticed an exacerbation when hot. … hot weather, overheated room, hot shower.
If you don’t mind, I have a couple questions. Have you taken medications in addition to Mestinon? Have any medications been particularly helpful? Did any have intolerable side effects? I am on Mestinon and my doctor is recommending we add Imuran. I have a lot of concerns about Imuran but don’t know if the concern is warranted?
Also, what medical specialty do you recommend as most knowledgeable in treating MG? General Neurologist?Neuromuscular specialist? Rheumatologist?
I know no one with this confusing disease and am feeling quite alone on this journey. Thank you, again, for your response!!

VIEW AND REPLY