Thread: Bad moment
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Old 08-19-2014, 08:53 AM
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cait24 cait24 is offline
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cait24 cait24 is offline
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Join Date: Sep 2012
Location: Newtown, PA
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Angel, so sorry you are going through this. The first time I was on high dose prednisone was wonderful. No side effects, I had loads of energy and I was out weeding the garden. This time when I am on high dose prednisone was the exact opposite experience. I am sick to the very bone - muscle and bone pain, migraines, leg swelling, a week of rectal bleeding, constant diarrhea, nausea 24/7, and the MG is no better. I can barely function. I have weened down to 30 mg from 80 and the symptoms have barely improved. I can not take the meds anymore. I am going to wean off prednisone and never go on it again. I have been out on disibility 2 months and feel like I will never be able to work again. I will have another round of IVIG in a few weeks, hopefully that will help.

You should call your primary care physician too. You may be able to get some meds to counter the effects of the prednisone and get a referral to a GI doc. The abdominal bleed needs to be evaluated and treated ASAP. Sometimes the meds are worse than the disease. It is a balancing act.

40 to 20 mg of prednisone was probably too fast. Did your primary or neuro tell you this? Weaning off prednisone is usually much slower for MGers. Every time I step down, I feel really bad the first few days and then the symptoms subside. This happens at every step down for me, A lot of people just can't tolerate the prednisone. Weaning off prednisone is hell for me, worse than MG.

Hope you feel better soon.
kathie
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