Hi I am on the drug Pyro--- sorry can't remember how to spell it. I am still tired. My dr upped my pills by one. Are there instances where this drug just doesn't work? How dangerous are the side effects for the steroids. And do they help more?

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

Mestinon - the same as that pyro worked for me - just not enough. I needed steroids in order to function. I have been on them for 11 months now........On the positive side I can still walk, talk, breathe and my face is now longer a "mask", so the side effects (which suck) are still less bothersome than going without......

Hang in there! You may just need some roids in order to feel better!

Erin

Hi Barbara356,
Did you look at the last reference I posted in the subject "Useful sites for Myasthenia Gravis" appearing at the top of the first page of this site?
It will give you some ideas about the treatments, the medications, their pro's and con's and the delays for their onset of action.
Maurice.