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Old 02-26-2010, 12:44 PM #9
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Maxwell'sMom Maxwell'sMom is offline
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Hi Jessica, First things first I've been on Prednisone for almost 6 years, never been off, but have tried to taper. Many times I cried, cause I couldn't even stand to look at myself, as I feel like my cheeks could be mistaken for my other set The side effect may have cause me Pulmonary disease, Adrenal disease, and it has caused me to have type two diabetes. So boy can I understand you wanting to get off of it. As It has caused me a host of other problems, But, it has helped me breathe, walk, chew, and do some things I wasn't able to do before treatment. Of course I'm on other meds for MG as well. CycloSporine, Provigil,Prednisone, Mestinon, and I know I'm leaving one out, can't think.

Anyways, to your question, Be very very careful to wean with the help of your Doctor. I have found from talking with many many people who have come off of Prednisone is that it didn't seem to matter the amount, but how your Adrenal glands react to waking up again, if they wake up. It can be very life threatening if you go off on your own. So Please please please do so with your Neuros help.
I know of a person who had such a hard time getting off, and waking her adrenals that she had to use a razor to shave off a tiny bit off the pill once a month to get off of it, and even then she was having problems. It took her two years to come down from something around 7mg.
And truthfully, I've heard that in varying degrees from several different MG'ers.
So Please be careful.
Ask a lot of questions, read up on prednisone, adrenal crisis etc.
God Bless You I really understand, and wish I too could get off, but my body won't let me.
Much Love and Prayers
Lizzie
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