PMR savvy doctors in Portland Oregon

"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.

I think that your nasty rheumy has moved here to Minnesota. Ha. same situation. I have been on for 8 years becasue of PMR and am fine actually at 2mg. with tylenol added for osteoarthritis... She told me PMR only lasts 1 year EMPHATICALLY and dismissively and that I just needed to taper and perhaps take sulfasalazine *anyone on that?).. which seems to be for Crohns disease and RA neither of which I have. I will not see her again. When I drop below 2mg. which I did for 2 months stayed at 1.5 just to OBEY her.. I was in terrible pain and did not exercise and slept a lot and was miserable. when I am at 2mg. (I went up to 4 and tapered quickly back to 2) I feel ok and walk 3 miles a day and do yoga 2 x a week and beginner tap dance. Surely having the exercise and the happiness is more beneficial than 2 mg of Prednisone__??? sorry this is so long. any thoughts? thanks.

Hmm...maybe she cloned. I'm in total agreement that you should dump your rheumie, and I'm glad that you can get by on 2mgs. Right now I'm still on 6 and will go back to 5, and then hopefully see someone else soon. Good luck!

Update: OHSU cannot see me until February. In the meantime, someone from my Providence doctor's office called to try to get to the bottom of the problem. She said she would talk with the director and if I was willing, they would assign me another doctor. They also will handle my prescription in the meantime, which those of you with PMR know is crucial. So I will see how that works out and if it fails, on to OHSU. Thanks!

I think that your nasty rheumy has moved here to Minnesota. Ha. same situation. I have been on for 8 years becasue of PMR and am fine actually at 2mg. with tylenol added for osteoarthritis... She told me PMR only lasts 1 year EMPHATICALLY and dismissively and that I just needed to taper and perhaps take sulfasalazine *anyone on that?).. which seems to be for Crohns disease and RA neither of which I have. I will not see her again. When I drop below 2mg. which I did for 2 months stayed at 1.5 just to OBEY her.. I was in terrible pain and did not exercise and slept a lot and was miserable. when I am at 2mg. (I went up to 4 and tapered quickly back to 2) I feel ok and walk 3 miles a day and do yoga 2 x a week and beginner tap dance. Surely having the exercise and the happiness is more beneficial than 2 mg of Prednisone__??? sorry this is so long. any thoughts? thanks.

I hope the doctor who said you didn't have PMR had another diagnosis. I did have a rheumatologist who examined me very thoroughly and finally said "I don't think you have PMR, but I do not know what you have. " In retrospect I have to respect a 55 yo rheumatologist who admits he doesn't know what I have. Maybe after 30+ years of a PMR diagnosis I really have a mysterious problem.