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Old 03-07-2009, 07:16 PM
ras1256 ras1256 is offline
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Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
ras1256 ras1256 is offline
Member
 
Join Date: Feb 2009
Location: outside Denver, Colorado
Posts: 366
15 yr Member
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Hi Barbara,
Mestinon (Pyridostigmine is the generic for it), gives me a little lift within about 20 minutes or so, depending on how bad I start off. It's nothing that's going to get you really moving if your way far down, in my experience - just a good safety net drug.

The steroids have very serious side effects with long term use, so usually the docs will only use them to build up your strength in the short term, but they take time to really start working, too. Often, they'll put you on Mestinon, then steroids and an immunosuppressant, or steroids then an immunosuppressant. Their goal being to get you off the steroids as soon and safely as possible.

A lot of the drug therapies, unfortunately are trial and error. Different myasthenics react differently to all of them. Sorry to add to the frustration, but such is the nature of our beast.

Keep in touch with your doctor to make sure you understand what you can/should expect time frame wise. I do a lot of research on the internet whenever I hear of something new, or need refreshed on medications. You can type in whatever you want to know about in a google search bar and it will give you all kinds of links to check out.

Good luck with your therapies. Keep us posted how you are doing and remember that most of dealing with Myasthenia is learning what your limits are and how to identify your triggers - takes practice, though.

Becky
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"Thanks for this!" says:
BARBARA356 (03-07-2009)