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...
Hey, as many of us for several reasons have tried to learn our MG or even test our dx's, I wonder if when we lower or go off our Mestinon dosage, can it possible make it worse when we see it is not time to lower or get off it?
We were all concerned last night here at my house, we thought I might of been having a TIA or some medicine reaction, but turned out I needed more Mestinon then my rx was for (2-3 60mg's a day). I took a 4th as a rescue need, if it didn't work we would have been at H,ugh!! But it worked great!!!
A lil' history as to why this question..... I went off Mestinon for 8 &1/2 days, noticed my symptoms coming back but not as pronounced & I got a neuro appt. sooner than I thought I would so I thought "well let him see me off it" & after the appt I'll get back on it. Well he told me to get back on it right away too! As the stated above happened it made me wonder if those "trials" can do more harm than good or if that question encompass' a lot of various answers due to each individual situation. Thoughts anyone?? Hope I made sense!!! MeLisa
We were all concerned last night here at my house, we thought I might of been having a TIA or some medicine reaction, but turned out I needed more Mestinon then my rx was for (2-3 60mg's a day). I took a 4th as a rescue need, if it didn't work we would have been at H,ugh!! But it worked great!!!
A lil' history as to why this question..... I went off Mestinon for 8 &1/2 days, noticed my symptoms coming back but not as pronounced & I got a neuro appt. sooner than I thought I would so I thought "well let him see me off it" & after the appt I'll get back on it. Well he told me to get back on it right away too! As the stated above happened it made me wonder if those "trials" can do more harm than good or if that question encompass' a lot of various answers due to each individual situation. Thoughts anyone?? Hope I made sense!!! MeLisa
I will bet the answer depends on SO many variables though! Even on which forum or which neuro you are asking!
It works on a symptomatic basis only right? But I wonder if it depends too on which other medications are also giving a helping hand and at which stageor which point of a flare up you are in the disease. If I could have gotten Mestinon when I was falling into my dinner plate or unable to hold a telephone to my ear/brush my own teeth 2 years ago every single day almost at a predictable hour then I would have taken it constantly as those symptoms were constant also.
However since a strange general limb remission in 2011 I know my symptoms are mild and come and go making a more erratic MG profile pattern now and there are luckily more gooddays than bad ones. I also wondered if it would make it worse in the long run. Can being Mestinon free for a while make the next flare up an even bigger shock to the system even though it is not necessarily worse? In milder cases like mine you are not putting your body through a roller coaster ride by not using Mestinon as theres a smaller gap between symptomatictimes and asymptomatictimes. I also wonder if you can prolong the drugs efficiency by using it sparingly.
Sometimes I take my dose and thats all I need for a few days. Especially now its zero degrees outside I have favorable neuromuscular transmission temperatures on my doorstep ! My gut feeling is that the disease is doing its own thing anyway regardless of the Mestinon. I have also heard a lot of people (also on other drugs) say that they wondered how long they had been taking it unnecessarily. I know I certainly wouldnt be doing any trials had my symptoms been more severe at this moment.
Best Wishes!
Calmday
If you have no difference on or off it, then you are fine. When that day comes, you are ahead of the game.