Do I really have PMR?

The thing about the biopsy is, if it's positive, you've hit the jackpot for treatment. But they can also come up with a false negative and often do. This is because the cells are random, and if the piece they take out for the biopsy doesn't happen to have a cell in it, it looks like you're negative for GCA. Hopefully, you'll get the straight goods with the MRI. You're lucky you have access to it.

I am blessed indeed!
I don’t understand why a diagnosis can only be made by what can be seen via tests.
I know what I am feeling and experiencing. All the symptoms of GCA have made their appearance in grand fashion! 🌵

Wow, I’m going to read about this. Thank you so much. I can’t tell you how much better I feel on prednisone now. I’m perfectly fine. Slight headaches now and then, but I’m back to normal.
This site and all of you wonderful people help so much too. 🥰

SusanEllen - So you'd prefer the doctors just be guessing? So many illnesses have similar symptoms. The disease you've been dealt, unfortunately can be very difficult to diagnose. For some people it has taken years of pain before they finally get a diagnosis. At least you know you're probably on the right track. Just take it one day at a time. We're all walking beside you! 8>)

Ah, guess work is still a part of everything. I understand what you are saying.
I know my body very well and I can tell you that I have never had all of these strange unilateral goings on before. It’s textbook…
So, when it walks like a duck, looks like a duck, sounds like a duck, and smells like a duck you can bet it’s a duck.

GCA is basically treated with one drug at the present time. There is no cure, and there is a high probability of relapse. The biggest concern is permanent vision loss. I’ve already had intermittent vision loss. GCA is not potentially fatal like the other form of Vasculitis I have (PAN).
So, why do I need a formal diagnosis? I guess I really don’t 🤷🏻‍♀️not for me anyway. My doctors and the insurance company are going to want something to pin on me. ☣️

I had normal SED rate for the first year I had PMR. Only CRP was elevated. I have had it for four years.
Every time my levels were up and I went up on prednisone they returned to normal. I am now three months into the biologic drug Actemra. What a wonder drug!! All my PMR pain is gone. I still have profound fatigue, but I deal with that. I heard that once all pain disappears on prednisone that is definitive for PMR and the bloodwork would be expected to return to normal. Best wishes to you!

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.

@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?

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!

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!