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Old 03-08-2012, 03:42 PM
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
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Hi, Scott. Some of us have found that the first course of IVIg had much less of an effect than subsequent courses. So if you have it again, it might last longer. I think six weeks is typical. Your doctor may try you on a higher dose, too.

Did your neurologist talk to you about adjusting the Mestinon dose? I thought it wasn't working at all for me, but it turned out I was taking too much. A dose that is too high can make you worse. Some neuros allow their patients to work out the dose that is best for them--within certain guidelines, because too much Mestinon can be dangerous.

You say "AI chemo," and I'm not quite sure what you mean. There is a whole array of immunosuppressant drugs. Some are easy to tolerate (I'm on Imuran, with no side effects that I notice) but work more slowly if at all, and some are harsher and riskier and work more quickly. Prednisone works very well for some people, and works quickly, but comes with risks and side-effects that I personally am trying to avoid. At some point, when I've really exhausted my other options or if I get worse, I will consider it.

You will learn what triggers symptoms, and what helps you avoid getting really weak, but you'll learn faster if you journal.

Abby
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