Do I really have PMR?

This is a very important question and needs more scientific research. I have seen 5 different rheumatologists (R) during my 35 years with PMR. The first R based on my discription of my pain which seemingly came out of a text book that I never read. prescribed prednisone (P) which solved my pain in 6 hours that I had for years. The second R said I was doing so well on P that he would not change anything. The third R, unbelievably, examined me for one hour and 40 minutes one on one and after that time he said to me, "I don't think you have PMR, but I do not know what you have." The 4th R basically said the same thing that the second R said. The 5th and current R didn't think I had PMR because I was first diagnosed in my 40s when PMR is a disease of 50 and over. He tried various other drugs other than P and none worked. I am now on Kevzara but could not get below 2.5 mg P a day.

@jfannarbor

Maybe you should stick with the rhematologist that you like the best. Having too many opinions is just as bad as not having any opinion about a diagnosis.

I think being in your 40's "might exclude" PMR back then. However, age wouldn't exclude the diagnosis of PMR later on. There are plenty of other autoimmune conditions that feel like PMR when you are younger. I had symptoms similar to PMR in my early 30s. I was diagnosed with another autoimmune condition back then. My first dose of prednisone was approximately 40 years ago.

I waited until I was 52 to be diagnosed with PMR even though my symptoms hadn't changed that much. I "self medicated" for 20 years before PMR was diagnosed. However, Prednisone was prescribed to me in massive amounts by an opthalmologist for uveitis but not necessarily for other things.

My wife disputed how much I self medicated with prednisone. She made an appointment for me to see her primary care doctor when I needed help getting out of bed and dressed. She decided to go with me to the appointment so I wouldn't leave out any details.

I eventually got a "consensus opinion" from three rheumatologists at one visit when I was diagnosed with PMR. My PMR diagnosis was in addition to some other autoimmune conditions. I didn't know what PMR was back then. When there were three rheumatolgists together in one room, I told them that my only problem was that I ran out of prednisone! Otherwise, I didn't think I needed a rheumatologist.

Some genetic testing might be a good idea for you. I was fortunate that a doctor did a genetic test on me 40 years ago. At the time genetic testing wasn't readily available and it was expensive. The doctor said a genetic test wouldn't solve the problem or dictate how I would be treated in the future.

The genetic test was positive for HLA-B27. That predisposed me to a whole slew of rheumatology disorders but not a single definitive diagnosis.
https://www.ncbi.nlm.nih.gov/books/NBK551523/

@dadcue I didn't search out different rheumatologists, but over 35 years and moving around I had to find 5 different rheumatologists. I think part of our problem is PMR is hard to diagnose and we still have not found out what causes it if there is one cause.

@jfannarbor

PMR is no different than other autoimmune disorders that don't have definitive diagnostic tests. There are some characteristic symptoms of PMR but these symptoms overlap with other inflammatory conditions so they aren't specific to PMR either.

ESR and CRP are nonspecific tests for inflammation and they might be elevated for almost any reason. A rapid response to prednisone is a characteristic of PMR but many other inflammatory conditions and types of arthritis respond in the same way. When a synthetic corticosteroid was first tried for RA ... people were "miraculously cured."

The following little abstract says it all about the miracle of corticosteroids. What is often overlooked is the last little phrase that says, "the side effects are still daunting."
https://pubmed.ncbi.nlm.nih.gov/26611547/
--------------------
I remember when I was first diagnosed with PMR. I was fortunate to have the same rheumatologist for 15 years after being diagnosed with PMR. We could be brutally honest with each other. I remember when I somewhat accused her of only diagnosing me with PMR because I wanted prednisone. It was true that I wanted prednisone but not for PMR because I didn't know there was something called PMR. I respected her because we shared the same goal of getting me off prednisone.

The only reason there were three rheumatologists in the room when PMR was diagnosed was because nobody was sure what was wrong with me. They were reluctant to prescribe prednisone to me because I already had a diagnosis of reactive arthritis which isn't treated with long term prednisone. I didn't understand why reactive arthritis wasn't treated with prednisone since I had been taking prednisone for many years already. My flares of reactive arthritis usually happened with a flare of uveitis so my ophthalmologist prescribed all the prednisone to me.

PMR was diagnosed because I told the rheumatolgists that the pain gets really bad if I don't take prednisone. Everything else was ruled out when they asked me if the pain was anything like what I ever had experienced before. When I said the pain was completely different then that confirmed PMR.

I really liked my first rheumatologist that I had for many years. However, I needed a different rheumatologist when I retired and transferred my care to the VA. The next rheumatologist wasn't sure about PMR but wanted me to try something new because it might be "my best chance of ever getting off prednisone." I was told there was new research about a biologic being used for GCA. I didn't have GCA but was told that the biologic should work for PMR if I was willing to try it. You probably know what happened when I tried Actemra.

I think a bigger problem nowadays is that not enough patients are willing to try other treatment options for PMR. There is the widespread belief that prednsisone is the "only option" for PMR. Another problem is how expensive it is to do research in order to get new treatments approved. There are some doctors who will say that prednisone wouldn't be FDA approved for PMR except that it was grandfathered in.