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...
Hi all,
It seems to be a common problem for many of this board to be able to determine whether we are taking too much or too little mestinon. I am finally improving and have a dramatic decrease in the amount of weakness i experience (likely due to IVIG) yet i am still taking mestinon 60mg 3 times a day with 180 mg at night time. The small amount of weakness that i do experience later in the day, i am now having trouble determining whether this is due to the mestinon in my system or not.
What are the signs of overdosing oppose to helping? How do i know if i'm overdosing?
It seems to be a common problem for many of this board to be able to determine whether we are taking too much or too little mestinon. I am finally improving and have a dramatic decrease in the amount of weakness i experience (likely due to IVIG) yet i am still taking mestinon 60mg 3 times a day with 180 mg at night time. The small amount of weakness that i do experience later in the day, i am now having trouble determining whether this is due to the mestinon in my system or not.
What are the signs of overdosing oppose to helping? How do i know if i'm overdosing?
You could do 30 every 3-4 hours and see what happens. I adjusted mestinon all the time. In fact one time my doc told me to continue taking when I did my prednisone drop and I stopped anyway because I really felt it wasn't necessary and I did fine. He was glad I had stopped on my own. We are the best job at judging our mestinon. If I was you I would stop the night dose first and see what happens.
Just remember that if the symptoms don't warrant it, we don't have to take mestinon. IVIg is a temporary fix also, so be careful. If the mestinon is helping, keep taking it. If we are having side effects from mestinon can be a clue to lower dosage. I have had my share of cramps caused by twitching.
It was a goal of mine to get off of timespan at night and was tough to let go of the safety blanket after I had choked in the mornings. You will have to know when that time is or take a chance. Other than that, taking 60mg 3X a day is not much if you can tell it is helping.
When reading the possible side effects in the pharmaceutical handout I still call out "are you kidding me?!"
I agree with Ann and Cg, cut back minimally and see how you feel. Be cautious with your level of anticipated activity before doing so. Choose a time when you have the opportunity to rest and recover if necessary.
I've only been on mestinon a few months. Sometimes I've wondered if I've taken too much because after 1.5 - 2 hrs I feel like I need it again. So I sit and wait, but keep getting worse, and when I take another one my eyes pop open and I can walk again.
From what I understand that is the key; if you feel worse when the pill kicks in after 30 min it's too much, if you feel better your body needed the pill. I hope your doc is easy to communicate with about that, they should be able to help you the best.
I was able to lower the mestinon just recently but have another surgery mid month so anticipate I will probably find I need more for a short while. I go by amt. of weakness in breathing and in my arms and legs. I get a very odd gait when I don't have enough.
Knowing that I am taking more then I need is something I have had less experience with determining. I have never had the weakness increase with taking the medications only the opposite. That said, I have been titrating all the way through these past 9 months.
In the beginning I consistently had weakness increase at 2:00 pm and more symptoms in the evening until I started adding in a dose of mestinon at this time. When I started having many days without much noted weakness and need to add meds I tried cutting back a bit at a time and have reached a point where I only need the BID extended release plus 30-60 mg. twice a day. This no doubt is my temporary lowest. IF I tried to put in large installations in the garden that would have to go up again. It is such a balancing act.
I know enough now to know I will have to increase tho when I go on antibiotics and pain meds. The first time I had a huge increase in breathing weakness I truly did not know what taking more would do.
I had read that taking too much could cause increased weakness. I was so uncomfortable I took the extra med and within half an hour had good relief so I know I did the right thing for me. It is a learning experience where you learn what it feels like not to have enough in your system. It is the timing that helps teach you. Like others have said...if you are weak and take meds and within the hour feel better then that was the right thing to do. When cautious in the beginning I cut pills in half and in half again until I felt more confident.
Confidence comes over time. Good luck with this! Marie