finally saw rheumy; felt snarky, then puzzled

HI you all, I finally saw a rheumy and wondered if I should have warned her that I have a very good memory and am quite good with numbers before we talked.  More details below. But then I became puzzled, so I am glad I didn't challenge her but merely listened.

      She had an extremely narrow definition of what a PMR diagnosis needed.  I remembered how often you guys complain about your rheumies, and wondered why they dislike that diagnosis so much. 

         She mentioned a study done there where people were asked to choose between living 10 years longer in pain, or just 1 year longer without pain.  She said 80% of the subjects in the study chose the 10 years in pain.  I immediately chose the 1 year! Then she talked about "the awful side effects" of  prednisone.  Could that be why rheumies don't like the diagnosis?  The thought that most people, apparently, would rather live longer with pain?

       Many so called "side effects" of pharmaceuticals are really due to the disease or other confounding factors, not the medicine.   For example, cataract occurrence is largely age related, so to say that prednisone causes cataracts may be the result of a very poor study that did not adjust for age. As any epidemiologist will tell you, there are lots of crummy studies out there!

         In my case prednisone had absolutely nothing to do with my cataracts, they developed long before.   And it has nothing to do with my bruising as she thought: I have had blue spots caused by enthusiastic dog toenails for 20 years, long before any other problems. 

     In her narrow definition of PMR, she seemed to think one needs a sed rate in the 80s at least (mine was 37).  So my statistical mind asks whether that too is a false correlation. Surely, since there is no definitive test, it is just a matter of opinion. She also noted that I described pain and tenderness rather than stiffness, and thought I should have described stiffness.  There's a difference?? And I had butt pain rather than the hip pain she thought I would need.  So she was not convinced of the diagnosis despite my "dramatic response" to prednisone.  She said nothing about what else it might be.  So maybe that is the big question we have to ask: if it's not PMR, what could it be.  Fortunately she was not opposed to my continuing on prednisone, though she wants to get me off it in the long run.  That is a reasonable.  

         Then I remember she said PMR occurs equally in men and women, but of course it doesn't.  Women get it twice or 3 times as often.   Also the rate of PMR is increasing in Britain.  So my hypothesis is that they have stopped giving women HRT and that is causing the increase.  Both sexes lose hormones with age, but women lose hormones earlier.  So this might well account for gender differences as well as the late age of onset of PMR.   

     Rheumies have a lot more training in the subject that I do, at least I hope they do, and I would really like to understand their opinions more than I do.  Too often interesting scientific papers are not available without an expensive subscription to the specific journal, or a trip to the nearest medical library.

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