Hi Kelly,
Glad/sad you found us. You'll find a wealth of support and information from the folks on this forum. Feel free to share your feelings, symptoms, and experiences.
As for prednisone taper, many of us find that slower tapers are better. It took me 8 months to go from 20 mg/day to zero. I purposely stayed at 5 mg/day for about three months to try to avoid having a flare over the holidays. That strategy worked ok for me. I've been off pred for almost two months now. My final taper was to reduce the dosage by 1 mg/day every two weeks. I think the hold at 5 plus the overall slow taper helped my adrenal glands kick in again.
My symptoms at onset were similar to yours. The hearing in my right ear got clobbered pretty hard. I had the eardrum lanced twice and had a tube for awhile. I wear hearing aids in both ears now to compensate for wegs damage and the cumulative effects of excessive noise in the military and industry. I hear ok, but not well. Hearing appears to be stable.
Concerning cardiac involvement, my family doc keeps pretty close tabs on me (lipid panel, cbc, liver panel, c-reactive protein, and urinalysis). So far, no signs of cardiac issues. (I should mention that I'm now 66 years old.). I haven't read much on this forum about wegs attacking the heart, but I wouldn't rule out the possibility.
I also would encourage you to find a wegs/Vasculitis specialist. You can find a list on the Vasculitis Foundation website. I go to Cleveland Clinic, and others on this forum go to Mayo Clinic or Johns Hopkins among others.
Hope this helps. Good luck and better health!
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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