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We are generally afraid to make medical decisions because we do not have knowledge as doctors do. There is a real risk of going into a crisis if we stop taking medication suddenly. We also know that myasthenia gravis is not like a headache, which can be helped by taking a pain killer. I asked my pharmacist what would happen if I suddenly stopped taking azathioprine. I know the answer, because when first taking it, I had to have a high dosage of prednisone to assist. I then tapered off. The azathioprine also took time to become effective. The risk of having a life threatening crisis has made me continue with my medication(azathioprine).
Mestinon works by preventing the breakdown of acetylcholine. This helped me as it basically counteracted the effect of the immune attack on the acetylcholine receptors. But, when I as suffering from excessive cramps. I realized that it was part of going through a cholinergic crisis.( too much acetylcholine). In my understanding I had to reduce mestinon. So I stopped altogether, but was conscious of the possibility of having symptoms of MG again. I do notice difficulties with swallowing etc from time to time. I then quickly take mestinon, knowing that it takes about 15 minutes to take effect.
In my case, I realise that I know my body in a way no one else can know, including my doctor. So I will treat myself as I feel. But, it is risky. I cannot suggest that anyone else does what I am doing. This is my personal experience. So far in the last 4 years I have managed without a major crisis. I believe that if I followed and allowed a neuro to treat me and change meds as the doctor feels is best for me, I would probably have ended up in hospital a few times at least. Azathioprine works for me. But even if I feel that I am in remission, I am afraid to stop. This is the honest truth.