Do I really have PMR?

I think I have a very unusual presentation of PMR and have often wondered if I have PMR or something else. I would appreciate any comments on my history. About 35 years ago I started to have pain for no reason in (shoulder girdle and hip girdle. I went to see a Rheumatologist who Rx prednisone (P) 10 mg per day immediately because description and type of pain I described was straight out of a text book even though I had no idea of what PMR was. We found out later due to blood tests ordered at that first appointment that my Sed rate and CRP were normal and have always been normal. Within 6 hours of taking prednisone, I was a new man. The results were so amazing that my wife saw the difference before I told her what I was doing. Now the strangeness begins. I tapered off P and all was fine for about a year and then PMR returned. I went on P and things were fine for a year. This cycle went on for 20 years with the time between P becoming less. In the last 35 years I have seen 3 other rheumatologists and about 10 years ago went on 2.5 mg of P daily and just recently I have gone on 5 mg of P daily since the pain and stiffness have gotten worse. The second rheumatologist I saw did the most complete physical examination I have every had related to PMR and after being one on one with him for an hour and 40 minutes he said, "I don't think you have PMR, but I do not know what you have." The third rheumatologist I saw said that if my symptoms were solved by 2.5 mg of P that anything else he could do would not be as good due to side effects and cost. The last rheumatologist I saw realized that I was stiff and in pain and decided to go on 5 mg of P and see how my bone density responds in a year. After 10 years on 2.5 mg P per day my bone density was normal or above normal for a 77 yo male. Probably due to the excessive amount of exercise I do 5-6 days a week.
I think I have PMR, but the presentation I do not think is usual and the last rheumatologist first thought that I didn't have PMR, and still is not convinced due to the early on set of the disease. I probably had PMR before I was 40 since I thought the pain I was having was due to the excessive amount of exercise I have done my whole life.

Hi Englebarb, Itta, John Bishop.
I had PMR 10 years ago, successfully treated with Prednisolone. Started experiencing exacay the same pattern of pains in March 2022 and was convinced it was a recurrence. Neither ESR or CRP were raised. I had to prompt my GP to test consecutively for all potential conditions with a similar pattern of symptoms, before he sent me to a Rheumatologist. It took 10 months for my them to take it seriously. Rheum. told me I was a very unusual lady, that it was very rare to have it twice 10 years apart. 20mg of Prednisolone took the pain away in 36 hours.
Thank everyone for sharing their experiences!

My inflammatory markers all went away within the first MONTH of my diagnosis and Prednisone treatment.
However, the PAIN, fatigue, loss of appetite, and general depression have only worsened. (Prednisone does NOT take away my pain at all !?)
Even with my inflammation markers all being 'normal' for over 6 months now, I still have PMR. Go figure. I continue to believe that PMR is a weakly diagnosed (and treated) problem. PMR=Prednisone=more PMR= more Prednisone. I'm told this may last what's left of my lifetime.

@keelin - If the prednisone is not providing pain relief, then maybe you don't really have PMR but a condition that mimics PMR? I know you've mentioned you've seen 2 rheumatologists in other posts earlier but if it were me I would try to ask a bunch of "why is the pain not being addressed by the treatment" questions and maybe seek help at a teaching hospital or major health facility like Mayo Clinic. I'm sure there is a treatment out there somewhere that can help.

-- Diseases that mimic polymyalgia rheumatica (PMR):
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
-- Clinical manifestations and diagnosis of polymyalgia rheumatica:
https://www.uptodate.com/contents/clinical-manifestations-and-diagnosis-of-polymyalgia-rheumatica/print

PMR has no exact tests to diagnose it. Doctors go by symptoms and usually inflammatory markers are raised. But even that doesn’t prove you have PMR.
Read up on the prednisone. It doesn’t do much of anything for my pain, but it sure causes side effects! Doctors just love putting patients on prednisone and walking away. Seems easy. Meanwhile, what happening to your body? Only you can care.
Be careful.
And remember- Doctors “practice,” they don’t KNOW much, especially about PMR!

@jfannarbor, There are conditions that can mimic PMR and it's not uncommon to have PMR with normal CRP and SED rates from what I've read.
-- Diseases that mimic polymyalgia rheumatica (PMR):
https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica
-- Polymyalgia rheumatica: Look before you leap:
https://bpac.org.nz/bpj/2013/june/polymyalgia-rheumatica.aspx
If you do have PMR, too much exercise can elevate the pain levels, at least it has when my PMR was active. I know you've mentioned seeing several different rheumatologist but have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic?

Horrible! What's with these doctors that don't LISTEN to their patients, who often KNOW their bodies and what's going on!?!?
From what I've read/heard, it is not unusual at all to have a reoccurrence, regardless of the time frame.
I'm left wondering how long you will have to be on the (strong) prednisolone? It's such a damaging drug. (doesn't take away my pain, which renders it useless to me)