my husband went three years with IVIG x2 azathioprine which helped but he had a reaction to so had to stop...cell cept and low dose prednisone... what helped was a higer dose prednisone 60mg a day and then after 2 weeks decreasing...within 2-3 weeks he was symptom free he is now on cellcept and 15mg prednisone every other day and symptom free since for 7 months

I started with 30 mg (1/2 tab) 3 X per day. I was still having symptoms but so I went to 60 mg 3X/day.

It still affects my speech one or two times a day. I now I shouldn't be complaining but in my sales job it really puts me 'off my game' so to speak.

I tried going back down to 1/2 but that was worse. I have not tried more.

I have a minor side effect in that I almost continuously feel a 'little light headed' I also have some ringing in the ears.

Are some of you suggesting I try 1 and 1/2 - 3 times a day?

Right now I'm waiting two weeks to get back into my doctor to talk about a second IVIG treatment.

I felt great for a week!

Scott,

I'm sure you know this, but I have to say it: don't increase your Mestinon dose without your doctor's OK. It can be dangerous. If you take too much, it can make your symptoms worse, and if you really take too much, it can put you into crisis.

If you talk to your doctor about taking more Mestinon, he will probably suggest that you take the pills closer together instead of taking higher doses. Mestinon has a short half-life, which means it leaves your system quickly. Ask you doctor if you can adjust the timing of the dose you're already taking. For example, if there's a certain time of day that you usually get weak, you can make sure that you have the full dose of the drug in your system at that time. Or he might tell you to try four or five doses a day instead of three. I think most neuros start with the doses six hours apart, but many of us take Mestinon every four or even every three hours. There's also a time-release version that works for some people who have troublesome symptoms at night.

Best of luck with your next course of IVIg! I hope you get more than a week out of it this time. I bet you will.

Abby

I had not thought of taking more often than six hours. That might help me. Maybe 30 mg every 4 hours instead of 60 every 6 hours.

I have found 30mg every four hours works best for me, more than that proved too much. Currently on prednisone and mestinon as I had major MG attack in december. Hopefully will be off the prednisone soon, raised my blood pressure and the drug just scares me.