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Polymyalgia Rheumatica (PMR) | Last Active: 5 hours ago | Replies (15)Comment receiving replies
Replies to "That's interesting that you bring up EPIC. I wasn't familiar with Epic until you mentioned it,..."
"It's interesting too where you say prednisone is listed as one of your medical problems. In my medical chart, GCA, prednisone, and Actemra are listed as my major medical issues."
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My list of medical problems is rather long but most things have improved or have been resolved. Actemra hasn't made my problem list yet even though I have taken it for more than 5 years.
I was a bit surprised too when I first saw my treatment with prednisone for PMR was one of my medical problems. It first started to show up on my problem list after 2 years on prednisone. The longer I took prednisone, the more I realized it was one of my problems.
I don't know exactly when but the focus of subsequent rheumatology visits were more and more about how much prednisone I was taking and less and less about PMR. After 10 years of being treated with Prednisone, I tactfully accused my rheumatologist of prescribing Prednisone to me in the first place if it was my main problem. I was more concerned about my inability to taper off Prednisone.
In the notes from my last rheumatology visit, I'm quoted as saying, "I never want to be off Actemra." That wasn't true. I specifically asked my rheumatologist if Actemra could be stopped. The response was about what happened the last time Actemra was stopped. That was when I said, "I never want to stop Actemra IF I relapse and go back to the pain and had to take prednisone again.
I truly want to be off Actemra! I can see how Epic and AI could be integrated. Apparently they are integrated already but context, facial expressions and subtle ways of communicating are also important.