I am abandoning this woman! (From January9, one day after a disabling super flare.)
"Prednisone dosing - she is currently on 9mg of prednisone daily. She is trying to cut back by one milligram per month. Using naltrexone 4.5mg daily for pain as well. She remains convinced that her symptoms are due to PMR due to her family history and presentation with abrupt shoulder and hip pain and (weakness?)
I declined to refill her prednisone as I remain concerned about the risks of this medication outweighing benefits for her in light of her age and known osteopenia."
Who is she to decide for me that the " benefits" of prednisone for me are outweighed by her dramatic fear of prednisone? Doesn't that reek of moral superiority?
The reason I went to her was because my husband, as experienced as he is in Internal Medicine, cannot be my official doctor.
This was from her notes, but what she told me in the office was that she still didn't have a diagnosis so she wouldn't take over the prednisone RX. So that was a lie. She is a Family Practice specialist, an M.D. and is perfectly entitled to make a PMR diagnosis herself.
Meanwhile she changed the diagnosis to "myositis/myalgia multiple", added made-up complaints like "weakness", diagnosed me with "hyperferritinemia w/o iron overload", when I told her I have a genetic predisposition to hemochromatosis. Willing to add all kinds of off the wall diagnosis with zero data. One was "vit D deficiency", which she failed to test on the first round, and came in completely normal this month. She also failed to order a TSH after increasing my thyroid with zero data., last TSH was normal. Meanwhile I've lost more than 10% of my body weight.
She doesn't seem to realize that adrenal insufficiency is a real thing and an actual diagnosis she could get away with is steroid dependency, if not PMR. The "benefits to me" from prednisone comment made me realize that these people have no idea how much extreme pain and dysfunction this disease causes. The nasty rheum I saw asked why I was already taking pred after 6 months of this and I incredulously asked him if he had any idea how painful this is, he responded, "No, I don't"
She also doesn't seem to realize how common PMR is in the female population esp over 70.
2.4% lifetime incidence.
So she has refused to treat me!
I ran into one of my husband's ex-medical partners in the grocery store and he diagnosed PMR on the spot. He offered to take over my RX and gave me at least a year of 1mg and 5mg. His group has 120 years of treating old people and they are very familiar with PMR.
Changing doctors in a small rural community is hard. All of our Internists have retired, so I'm going to pay out of pocket for Direct Primary Care and hope I can make it work. Long Angry Rant, sorry!
./Rant Off