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 everyone - I hope that you are ok?
Can anyone help me with this, as you know I am struggling a little and the Mestinon Magic wore off after 3-4 short months for me! the 90mg dose seemed to make me worse and the 60mg isn't enough but I tried to stick with it.
Last week, I decided it was pointless to take something which doesn't really help and so I stopped it. I have to say, I didn't notice a great difference in my facial droop though my legs seemed weaker. After 5 days off them, I took one and it dramatically helped my facial weakness, it didn't completely resolve it but the heaviness in my cheeks went and I only had a slight drop on my top lip, movement when talking was freer and easier.......this lasted for just under 2hours before everything returned!
It is strange as this happened after I came off Mestinon for my SFEMG - before I came off it I didn't think it was helping but the first one I took after the test was like the miracle it was when I started taking it - again the effects soon wore off and after a day or 2 In wasn't noticing much improvement at all again.
Can anyone help me with this or explain what this means....or am I just completely losing it!!!! lol!!
Thank you!
Eve.x
Can anyone help me with this, as you know I am struggling a little and the Mestinon Magic wore off after 3-4 short months for me! the 90mg dose seemed to make me worse and the 60mg isn't enough but I tried to stick with it.
Last week, I decided it was pointless to take something which doesn't really help and so I stopped it. I have to say, I didn't notice a great difference in my facial droop though my legs seemed weaker. After 5 days off them, I took one and it dramatically helped my facial weakness, it didn't completely resolve it but the heaviness in my cheeks went and I only had a slight drop on my top lip, movement when talking was freer and easier.......this lasted for just under 2hours before everything returned!
It is strange as this happened after I came off Mestinon for my SFEMG - before I came off it I didn't think it was helping but the first one I took after the test was like the miracle it was when I started taking it - again the effects soon wore off and after a day or 2 In wasn't noticing much improvement at all again.
Can anyone help me with this or explain what this means....or am I just completely losing it!!!! lol!!
Thank you!
Eve.x
The best way to see how it is effecting you is to see how you feel 45min to 1 hour after taking it. It only stays in your system for four hours.
I can't explain why your experience happened. I think it depends on how "clogged" your receptors are??
DS Family, please feel free to correct me.
Go Away MG.
I take 30mg every three or four hours and when my symptoms are worse I take a little more. When the MG is really bad it seems the Mestinon does little. In my experience the Mestinon does not always help as much as I need. The choices are to live with it or go to the more potent drugs, prednisone or others that suppress the immune system. I choose to live with it although on several occasions I was on prednisone because things just got to bad. The past couple of years I have been lucky and have lived on just Mestinon. Try and find the dosage that works best for you and work with that based on how you feel. Too much does no good as I found out with timespan tablets as after a few hours after taking it I would have trouble swallowing. Stopped taking the timespan and it stopped happening. Hope you can figure it all out, I know it's tough and confusing but have confidence and listen to your body. Wish you well.
Al
How often are you taking 90mg or 60mg? If it is less than 4hrs apart, you could be taking too much for the time period, which could in fact make you weaker or no effect. Try taking 60-90mg four to five hrs apart from one another.
Did you eat before or during the time you took the mestinon? It also can be the case that too much can make things worse, but anything below 60mg is really not much.
You could also just be using too much energy etc before taking mestinon, wearing yourself out with your kids or everyday life and if that is the case, mestinon will be of no assistance. In general, you cannot take Mestinon for a muscle boost if muscles have already been worn down. You certainly cannot use mestinon to improve your fatigue or being tired at all.