Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I have many PMR symptoms but my bloodwork did not support this diagnosis. Therefore, I am stuck with pain and stiffness, fatigue, intermittent low-grade fevers, and muscle weakness with no treatment. It started in my shoulders, neck, and upper arms but now my hips and thighs feel the same. In January of this year, I was an active, energetic 69-year-old female with only moderate osteoarthritis. Now getting through each day can feel like a major challenge. I have to pace myself and also am my husband’s full-time caregiver. I’m worried that if my bloodwork doesn’t show any inflammation/autoimmune evidence, my doctor will never consider that this might be PMR and try steroid treatment. I know the risks of steroids, but how I feel matches many PMR testimonials, and I’m not doing well at all. My doctor referred me to a neurologist, but the appointment isn’t until March 5, 2024. I feel that a trial of steroid treatment might be warranted. Do doctors ever prescribe that without the corresponding bloodwork results (elevated sed rate and C-Reactive Protein)? I welcome any help and would like to know if others have experienced this situation.

I have many PMR symptoms but my bloodwork did not support this diagnosis. Therefore, I am stuck with pain and stiffness, fatigue, intermittent low-grade fevers, and muscle weakness with no treatment. It started in my shoulders, neck, and upper arms but now my hips and thighs feel the same. In January of this year, I was an active, energetic 69-year-old female with only moderate osteoarthritis. Now getting through each day can feel like a major challenge. I have to pace myself and also am my husband’s full-time caregiver. I’m worried that if my bloodwork doesn’t show any inflammation/autoimmune evidence, my doctor will never consider that this might be PMR and try steroid treatment. I know the risks of steroids, but how I feel matches many PMR testimonials, and I’m not doing well at all. My doctor referred me to a neurologist, but the appointment isn’t until March 5, 2024. I feel that a trial of steroid treatment might be warranted. Do doctors ever prescribe that without the corresponding bloodwork results (elevated sed rate and C-Reactive Protein)? I welcome any help and would like to know if others have experienced this situation.

I have many PMR symptoms but my bloodwork did not support this diagnosis. Therefore, I am stuck with pain and stiffness, fatigue, intermittent low-grade fevers, and muscle weakness with no treatment. It started in my shoulders, neck, and upper arms but now my hips and thighs feel the same. In January of this year, I was an active, energetic 69-year-old female with only moderate osteoarthritis. Now getting through each day can feel like a major challenge. I have to pace myself and also am my husband’s full-time caregiver. I’m worried that if my bloodwork doesn’t show any inflammation/autoimmune evidence, my doctor will never consider that this might be PMR and try steroid treatment. I know the risks of steroids, but how I feel matches many PMR testimonials, and I’m not doing well at all. My doctor referred me to a neurologist, but the appointment isn’t until March 5, 2024. I feel that a trial of steroid treatment might be warranted. Do doctors ever prescribe that without the corresponding bloodwork results (elevated sed rate and C-Reactive Protein)? I welcome any help and would like to know if others have experienced this situation.

Hello @cakodra, I would like to add my welcome to Connect along with @seniormed and others. I would see if you can get a referral to a rheumatologist as soon as you can. Blood work can be normal and you can have PMR.

"Can you have PMR with normal labs?
The diagnosis of PMR is possible, even if ESR and CRP have not increased. US and 18-FDG PET/CT evaluations might increase diagnostic rates of ESR and CRP negative PMR."
--- Polymyalgia Rheumatica (PMR) with Normal Values of Both Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) Concentration at the Time of Diagnosis in a Centenarian Man: A Case Report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313638/

There is also another discussion on the topic that might be helpful:
--- PMR with normal blood markers: https://connect.mayoclinic.org/discussion/pmr-with-normal-blood-markers/

You are your best advocate in this case. Can you discuss the trial of steroid treatment as suggested by @seniormed with your doctor or ask for a referral to a rheumatologist?

If you are not otherwise medically compromised with diabetes or hypertension why not push your primary doctor for a two week trial
of prednisone. If your response is dramatic it could be a point for
making the diagnosis.

Hi, @cakodra, sometimes the symptoms of PMR are there but the inflammation markers aren't elevated. If this is the case, doctors are advised to exclude possible infection, malignancy, connective tissue or hypothyroidism, and if ruled out, consider a diagnostic trial of corticosteroids, 15 - 20 mg of prednisone. If there is a "dramatic clinical response, it's most likely PMR. If not, they must consider the alternate disorders/diseases. (Cecil and Goldman's Textbook of Medicine, Chapter on PMR and GCA).
I had full blown PMR for about four months, my sed rate was only slightly elevated, and my doc at the time did not put it together. Fast forward about eight months later, my sed rate was 120 and diagnosis of GCA confirmed by temporal artery biopsy. I took Prednisone for about a year and a half and have been off it for about 10 months. I told the Rheumatologist that there is nothing like the pain of PMR.
It may be worth it to ask your doctor to do a diagnostic trial of prednisone, or find someone who will. Good luck and I wish you the best!

Echoing @johnbishop and @tsc, you definitely CAN have PMR or another inflammatory arthritis without elevated inflammatory markers.

It’s less common but it’s not so uncommon that it’s unheard of. Specifically, I have seronegative spondyloarthropathy (I follow this forum because my dad has PMR) which causes inflammation of the entheses (the place where the joints insert into the bone). This causes really bad burning and aching joint pain in large joints such as the shoulders, knees, and heels, though it’s most often in the lower body. My inflammatory markers have never, ever been elevated. It was to the point that Mayo Clinic rheumatologists misdiagnosed me. The pain persisted and eventually I decided with my rheumatologist at home to do a trial of a TNF blocker for this type of arthritis and it helped.

It can be difficult to differentiate between PMR and other inflammatory conditions though, and prednisone is nonspecific, meaning it could quash any type of inflammation and you might not be able to be sure it’s PMR. For that reason, in my experience it’s usually a rheumatologist you’d want to see for an “atypical presentation” of PMR.

My dad has PMR with elevated markers, but his pain pattern was “atypical.” A rheumatologist diagnosed him because we weren’t making any headway with his PCP. Honestly, I got fed up trying to convince him to even consider PMR that we just jumped over him and found a rheumatologist. But I know that’s not an option for everyone, plus there can be a long wait. We got lucky and I found an opening.

I see the others provided you with some resources you might be able to share with your doctor; maybe that would help.

What kind of doctor are you working with, and if it’s not a rheumatologist, do you have an option to try to find one?

I’m working with my internal medicine ANP for the most part. She has put in a referral for a rheumatologist, but it can take up to or more than a year in this area to get an appointment. And I have to have a referral. I still haven’t heard anything regarding that. I do plan to ask my ANP if we can try a trial period of prednisone to see if my symptoms improve. I also have bloodwork coming up in August, and that might help if anything has changed. My blood pressure readings have dropped significantly since this started—80s/50s is now my normal range, and sometimes lower. Considering that, I should be able to tolerate the steroids’ hypertensive effects.

Thank you—your message was very helpful.

Thank you, John. I neglected to mention in my original post that my doctor has made a referral for a rheumatologist, but she warned me that it can take up to a year to get an appointment with one. I’ve not heard anything yet. The neurologist who I will see in March of next year did a nerve conduction study on me in June, which showed no significant abnormalities. He agreed to see me as a new patient if my symptoms didn’t go away or if anything new occurred, but the appointment is still a long way off.

I see my regular PCP (well, actually an ANP—my doctor retired a couple of years ago, and I’ve only seen the ANP since) in September and will ask about a steroid trial then or sooner. I have bloodwork due in August and am hoping it might show something more definitive than last time.

You’ve been most helpful. Thank you for the links and good advice. —Cathy