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...

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jmslony 09/12/2013

I recently felt like I was taking to much mestinon. I have been taking 2000 mg of cellcept for about 48 weeks. I also am taking 120mg of mestinon three times daily. Thought maybe cellcept was starting to work so need for less mestinon. Any feedback would be appreciated. Thanks Mike

newmugg 09/12/2013

You can usually tell if you are taking too much...it seems to make symptoms worse, stomach problems...you have read about it I'm sure.

Hopefully your cellcept is kicking in:-))

My neuro let's me play around a bit with my mestinon as the dosage may vary with flares and activity. What does yours say about changing dosing?
You might try taking 60mg and see how you feel about 30- 45 min later. If you think you need more, take your other 60mg or even 30mg You can also try taking 90mg and if it still feels like too much try 60mg to see how you are feeling.

-sherry

Bamboolilly 09/12/2013

Hi, ditto Sherry -- I was taking up to 630 mg daily. I'm now down to 60 daily. I could tell also...as it wore off, I felt better. So I would cut back from 90 to 60 to 30, and then lengthen the time. That's how I knew.
Be well,

deleted_user 09/12/2013

When prednisone started working well for me, Mestinon (which I took "as needed") made things worse rather than better--got just the side effects. So, I quit taking it a few days and then tried it again. It just made my cramp, jittery, and didn't help at all. So I quit it.

The theory is when the bad antibodies are no longer being produced, our muscle receptors grow back and are no longer under attack or being blocked and we have normal muscle function--so Mestinon does nothing useful. A positive sign of MG control!

Good Luck

cgreens 09/13/2013

48 weeks is long enough to see results from Cellcept. I didn't realize the Cellcept was working until I started reducing my mestinon. Taking too much mestinon can/will make you weaker and since mestinon is mild to most, especially after body is adjusted, you may not realize any other side effects on a regular basis.

I am a very active male and I am now down to less than 120mg of mestinon a day taking Cellcept for over 2 yrs.

That is your goal, to reduce mestinon and increase strength. So you should reduce your mestinon and see how it goes. No harm.

deleted_user 09/14/2013

Mestinon gave my stomach problems. I have been on Cell Cept now for a few months. No stomach problems and I seem to be doing better.

Barbel 09/14/2013

When I take too much mestinon, I have breathing problems. I can no longer take. 60 mg at once. I take 30mg every 2/3 hours. At one point I did not needmuch mestinon at all. I started w 15mg and tookore on the next dose as needed. My neuro let's me adjust my dosage as needed.

When I first was dx , I took an average of 400mg a day. A couple of times when my symptoms started getting worse, I took more when actually, I needed less. Sherry gave a great example of how to tell if u are taking too much.

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