Oh yea makes sense to me.
Last week for some crazy reason, actually crazier than this disease I woke up(after a bout of food poisoning or flu) and did not feel need for mestinon. I havent had any mestinon for one week. Today I took some at 10 because I felt my chest(after grocery shopping) and I just took some because I have been overdoing it and my eyes were twitching. I have been real busy today.
My neurogist at U o M told me to take MESTINON as needed. I have been taking 90 mlg avery 3-4 hours since about April. Round the clock. My doc said take as needed so when I felt I could stop, I stopped.
My cellcept must be working now after 4 months who knows.
Anyway I was told that mestinon is short lived and unlike the other drugs which we can't stop on our own. I am also on predisone. I see mestinon like tylonal and a headache. When the headache is gone....we stop the tylonaL.
Ann

Chroux,
That you are needing less Mestinon probably means that the thymectomy and immune suppression are working. That you are symptomatic and able to take the Mestinon and are aware of lapses means that it is probably still needed. I don't know what dosage "normal" people can take without side effects, but we can certainly tolerate much higher dosages. If you feel that you don't need as much, you might want to talk to your doctor about decreasing the dosage. The danger of just stopping all at once is that Mestinon acts as a "blood thinner" rather like taking baby aspirin every day and sudden drops in activity might lead to clotting problems. Your other question was about anemia, and if you are taking any other medication for prevention of strokes and heart disease, you may need to discuss that with your doctor, too. Usually we respond pretty well to surgical loss unless there is blood loss somewhere else.

I don't take iron very well, and would hate to have to take it already having some GI problems with the pyridostigmine. b.

I take 60mg every four hours, except when asleep. Mestinon lasts about three hours for me.

--Kerry

There could be other reasons you feel the way you do...There is a possibility of your digestive process. All types of medications etc would react in you slower perhaps in this way, if the pill(s) take(s) awhile to digest. Yeah, at some point you should only take it when you think you need it, but if you have a routine, you could lower it as you go and see how it goes. Take 30mg every four-six hrs and see?...It isn't going to hurt your underlying MG any to not be on it for any period of time. Just the symptoms will present themselves accordingly.
How active are you/have you been when you go longer stretches? Are you out and about and moving and groovin'? If so, good for you, Christo. That is fantastic! I wish you well in getting off any or all the meds and become symptom free...Sometimes I am tempted to not take my timespan before I go to bed, and sometimes I know there are times when I don't need to take my Mestinon during the day and I could stretch it out some and do to a certain point every once in awhile. Sometimes the time goes by and I am relaxing, and I just don't need it. Not using much muscle to sit around. Sometimes when I do delay my dosage, I end up regretting it via symptoms. It's a mixed bag. Just find the bag that is working for you, and get a new bag if you think it will help...So to speak.

Peace,

TJ

I stopped taking Mestinon time span at night. I started out gradually by eliminnating a couple nights a week. It's been about 6 months now that I haven't taken any and I haven't had any problems. I still take my normal dose during the day...60mg every 4hrs.
Strength,
Gail