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PMR savvy doctors in Portland Oregon

Polymyalgia Rheumatica (PMR) | Last Active: Dec 2 11:59pm | Replies (22)
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@saeternes

Thanks to everyone for your comments and suggestions. I am waiting for a reply from my rheumatologist to a recent message about pain, but I don't see any possible breakthroughs, so I will try elsewhere. I appreciate the Kaiser and OHSU suggestions and will look at both. Since I have been at OHSU before, they may be more likely to take me.

I hope to try Kevzara - I did raise the issue with my rheumatologist but she will not prescribe, since she does not believe I have PMR despite 16 years of being treated by qualified doctors and an inability to taper - I told her I had tried at least 30 times. She suggested Tylenol. I am debating with myself whether it is worth meeting with a medical manager at the facility where she works (or write a letter) to discuss her lack of sympathy for my pain, or whether I should just move on. I would hate to see this happen to others.

My recent tests showed adrenal insufficiency, after I had gone down from 5 to 4mgs. As I mentioned, with 5mgs I still have pain, but can barely make it. 7mgs certainly would erase most of my pain. I'll see what she says about the tests.

The doctor's ability to listen and take the patient seriously is very important. I hope to find a good one.

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Replies to "Thanks to everyone for your comments and suggestions. I am waiting for a reply from my..."
DadCue | @dadcue | Nov 11 5:04pm

"My recent tests showed adrenal insufficiency, after I had gone down from 5 to 4 mg. As I mentioned, with 5 mg I still have pain, but can barely make it. 7 mg certainly would erase most of my pain."
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Who did this test? Was it an endocrinologist? Was it an a.m. cortisol level or a synacthen test. I was told the result wasn't valid unless I could maintain a 3 mg dose or less for an "extended period of time."

My rheumatologist and I had developed a good rapport after many years. We were at a similar impasse when I couldn't taper much lower than 10 mg. I could get down to 7 mg but invariably I would increase my dose back to 10 mg.

I was referred to an endocrinologist when I was on 10 mg. The endocrinologist told me there was nothing she could do if I still needed prednisone to control my PMR symptoms. The endocrinologist referred me back to my rheumatologist but she invited me to come back to see her if I could ever taper down to 3 mg. I don't know what happened behind the scenes between the endocrinologist and rheumatologist.

I was adamant that I would NOT make another attempt to taper off prednisone. I wasn't angry about it but I communicated how I felt about it. I wasn't bluffing because I didn't see any way forward that would allow me to taper off prednisone. I didn't think there was any alternative to prednisone. I doubted my prednisone prescription would ever be stopped.

That was the start of a surreal chain of events. How it unfolded is still hard to comprehend. I guess my only advice is don't give up like I almost did.. Now I realize that getting off prednisone was worth it. However, staying on prednisone would have been the easier thing to do.

All to say . . . I can appreciate why you have taken prednisone as you have over the years.

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