[StephC]

Maybe i am having some brain fog at the moment but if mestinon alone doesnt get you back to the "nearly normal" lifestyle then does that mean average MG patient would have to take immunosuppressants (be it prednisone or something with less side effects) forever? Im thinking about what everyone on list has said they take and i think we all are taking one form or another of immunosupprssant.

(unless of course you win the MG lottery and go into remission!)

[southblues]

I am not. I take only mestinon. It is not doing all that I had hoped for. It does help and it helps a lot. But it is not cutting it any more. We'll see.

[AnnieB3]

Steph, Some people with MG can't take immunosuppressants. Some are on IVIG and Mestinon. The decision of what treatments to have takes a lot of thinking. Not only "how am I going to feel tomorrow" but "how is your body going to feel after years on a treatment."

I can't have anything but Mestinon, so I have to manage MG with rest and common sense. That's not always possible for those who are more severe. It honestly doesn't leave me with much of a life but I'd rather have it this way than to be in the doctor's office or the hospital all of the time due to an infection. Now, that is my particular case only and does not mean that would be the same way for anyone else.

It's an art form figuring out what dose and schedule of Mestinon works for you. For example, I'm on 90 mg. every 3 hours, round the clock. Yeah, my body wakes me up and says, "Take it now!" I know when it's run out without looking at a clock.

You only get about 2 good hours of use out of it.

Talk to your neurologists - maybe even a view from an internist - to figure out what you want to do that's best for you.

It's not easy trying to figure it all out!

Annie

[southblues]

Annie, that is interesting to know about the mestinon just running out too soon. That could be my issue.

[scrubbs]

And who decides?

Imuran = I

Cellsept = I

Prednisone =C

Not very knowledgeable myself but how were the ones used to treat MG picked from this?

http://www.bt.cdc.gov/agent/smallpox...press-meds.pdf

scrubbs

[alice md]

All options are possible in the "MG lottery":

A. you have an excellent response go into remission, taper down your meds and remain on a very low dose or none at all.

B. You have significant improvement, but require relatively high doses for significant periods.

C. You have no significant response and/or significant side effects. So, don't take any.

D. You have a spontaneous and long remission without requiring any medications.

And you can also have some combination of A, B, C and D.

For me it was D, and C.

I personally think A is a very good deal , B is OK, but requires a lot of thinking regarding long-term consequences, C-is not that great, and D is the best.