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Results of cortisol testing negative
Polymyalgia Rheumatica (PMR) | Last Active: Aug 30 10:27am | Replies (18)Comment receiving replies
Thanks. I was aware of the shortcomings of the tests, and I suspect that my rheumatologist is also since he neither ordered them nor apparently bothered to connect with my endo. As I said, my endo is primarily concerned with the amount of prednisone I am on and said it would "guide the taper." I think my rheumatologist is going to monitor my taper pretty closely basing it on symptoms and CRP/ESR. I don't intend to raise any questions regarding other tests -- that will be entirely up to my rheumatologist. He has been great at communicating especially since the triage nurse got in the way and set off a series of false cardio alarms. Details aren't important but I am still putting out the fires on that one.
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@potterywoman
It was a sad state of affairs when I learned about some of this stuff. My rheumatologist didn't want to refer me to an endocrinologist. My primary care doctor did all the work to "investigate" what was happening because of my long term prednisone use. I was referred to an endocrinologist the first when I was still on 10 mg of prednisone so the endocrinologist referred me back to my rheumatologist to see if "something else" could be done to reduce my prednisone dose. Something else turned out to be Actemra but that is another story.
The endocrinologist gave me an open invitation to come back whenever I could maintain a prednisone dose of 3 mg. I felt like that was going to be impossible so I planned on taking prednisone for the rest of my life. After Actemra was started, it was "relatively easy" for me to taper down to 3 mg of prednisone. My primary care doctor ordered a morning cortisol level which was low so I was referred back to the endocrinologist for the second time. My primary care doctor only referred me because the endocrinologist told me to come back to see her when I was on 3 mg of prednisone. The endocrinologist was surprised to see me again but given the circumstances she was not at all surprised by my low cortisol level.
At this juncture, all my doctors including an ophthalmologist were talking to each other. Remarkably, about a year later, I was completely off prednisone for the first time in decades!
I have set off some alarms in emergency rooms and intensive care units during my time on prednisone. The endocrinologist remembered me from about 5 years earlier when I had my knee replacements. I recognized her because she watched me like a hawk for about 8 hours after surgery. She wasn't part of the surgical team and only said she was with the medical management team.