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DiscussionAny Tips For Tapering Off Prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 5 9:44am | Replies (79)Comment receiving replies
Replies to "@dadcue Wow….😮 Dadcue, as always, I’m totally in awe of your detailed, easily understandable responses! Thank..."
"I hate to say this - my endocrinologist said I didn't need to taper prednisone from 3 mg to zero as long as my cortisol level was adequate. So much for slow tapers ... I guess."
Addendum to the above. I'm getting into addendums.
My endocrinologist also said she didn't know what would happen if I decided to stop taking Prednisone. There was no way to predict what would happen but I think she was more concerned about adrenal insufficiency. My cortisol level was adequate on the day it was tested but might not be adequate every day going forward. She said it was my choice but she strongly encouraged me to "give it a try."
There were competing voices that said I should stay on Prednisone for the rest of my life. My endocrinologist said I could always go back on Prednisone "if I felt the need." My endocrinologist said lifelong Prednisone was not a good outcome.
@jlo2252
You might appreciate what happened next more than most.
After I tapered off Prednisone the first time, there was a need for 60 mg of Prednisone again because of a massive flare of panuveitis. It was my first uveitis flare in 15 years. A different biologic (Humira) was tried which probably worked for uveitis but my PMR symptoms returned. I was stuck on 15 mg of Prednisone again until Actemra was restarted.
It was a temporary setback. I was able to taper my Prednisone dose from 15 mg to zero in 3 months the second time Actemra was tried.
Much of my job as a nurse was to make rounds with the doctors. I knew the patients but the doctors didn't have the time to explain everything. The doctors I worked with the most were research doctors so sometimes they lacked bedside manners. They would give their spiel and leave. I was expected to stay behind and explain things to the patient.
If the patient had questions that I couldn't explain I would never make something up. I would catch up with the doctor to get their answer or otherwise I said I would get the answer. Most of the time the question would be addressed the next day.