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

lss
Hi, I was diagnosed in spring 2022 and have been on Pred since then. I started at 20 mg and came down to 2 mg about 1mg /month at my docs request. My problem is that my pain level and stiffness and everything else is almost back to where I started. My sed rate is low so the doc is questioning the original diagnosis but my symptoms are right on. Has anyone else had this experience or suggestions?

My labs were never abnormal. My PCP didn’t think I had PMR bc of this but I sure checked all the boxes for PMR. Rheumatologist diagnosed it as PMR. Labs not always a way to diagnose it. I manage my own prednisone based on how I feel but mindful I need to take as little as possible. I tried methotrexate for 6 mos but I couldn’t tell that it did anything but make me nauseated. Good luck.

@robin1040 and @linneyshop, There are a couple of other discussions that you might want to take a look at:
--- CRP and SED levels: https://connect.mayoclinic.org/discussion/crp-and-sed-levels/
--- Ongoing pain with normal CRP and ESR - PMR?: https://connect.mayoclinic.org/discussion/ongoing-pain/

Someone once explained normal inflammation markers or normal CRP and ESR in the following way:

"It doesn't take too much inflammation in the wrong place to cause a whole lot of pain."

I had a condition called trigeminal neuralgia. This condition has various nicknames but sometimes it earns the honor of of being the worst pain known to humanity.
https://www.aans.org/Patients/Neurosurgical-Conditions-and-Treatments/Trigeminal-Neuralgia#:~:text=Trigeminal%20neuralgia%20(TN)%2C%20also,nose%20and%20above%20the%20eye.
I took prednisone for this pain even though I was told repeatedly that prednisone wasn't used for this condition. It always seemed like flares of trigeminal neuralgia happened whenever PMR was active.

What eventually alleviated the pain caused by trigeminal neuralgia was a surgery called microvascular decompression. The problem area needed to be visualized under a microscope to allow surgery to be done.

A CT scan didn't show any abnormalities. An MRI showed "something" but the problem wasn't identified correctly. Fortunately, the MRI was enough for the neurosurgeon to take a look microscopically in order to make an attempt to correct the problem.

Before surgery, the neurosurgeon asked me what I took for the pain. He said people with trigeminal neuralgia usually had a list of pain medications a mile long. When he looked at my medical record he didn't see that I took any pain medication.

I told the surgeon that prednisone was the only pain medication I took for trigeminal neuralgia. I added that nothing else worked very well. The neurosurgeon seemed skeptical so I added that prednisone didn't relieve all of the pain.

The surgery worked. My very first question after surgery was whether or not prednisone actually helped the pain. The surgeon conceded that prednisone was likely helping the microscopic inflammation and swelling that he saw.

It is interesting to note in the above link that GCA is said to mimic trigeminal neuralgia. I'm happy that I was only diagnosed with PMR and not GCA. Trigeminal neuralgia was more than enough pain so I didn't worry about GCA too much. I already had another condition called uveitis which can also result in being blind.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.
I eventually learned that I couldn't treat everything with prednisone. That wasn't the best solution in many cases. None of my doctors ever wanted me to take prednisone for as long as I did and certainly not for the rest of my life.

Hello. I keep looking for the Mayo Clinic citation that states the average duration of PMR is 5.9 years. Do you by any chance have it? My doctor was unconvinced that it takes that long to subside.

I don't blame your doctor for being skeptical.
https://acrabstracts.org/abstract/glucocorticoid-use-and-adverse-events-in-patients-with-polymyalgia-rheumatica-in-a-contemporary-population-based-cohort/
This study was frequently cited on another forum. The study shouldn't carry any more weight than any other study. For some reason the 5.9 years was repeated hundreds of times until it was generally accepted as a fact just because it was repeated so often.

"The study included 359 patients with PMR and 359 comparators. The median time to taper below 5 mg/day for 6 months was 1.44 years (95% confidence interval [95% CI] 1.36-1.62), while the median time to permanent discontinuation was 5.95 years (95% CI 3.37-8.88)."

The study doesn't even conclude that the average duration of PMR was 5.9 years. Statistics should never be represented as if they are facts. Nobody knows how long PMR lasts except to say some people are able to taper off prednisone sooner than other people.

Thank you! Your answer is exactly what I was looking for as this number is bandied about on many different sites without much documentation and is very discouraging for people. Your explanation is perfect.

I think there are too many variables for how long PMR normally lasts. My experience matches up with info from the Arthritis Foundation:

"It typically develops by age 70 and is rarely seen in people younger than 50. PMR may last from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis."
--- Polymyalgia Rheumatica - Arthritis Foundation: https://www.arthritis.org/diseases/polymyalgia-rheumatica.

My first occurrence of PMR came at age 64 and lasted 3 and half years until I was able to taper off. My second occurrence came at age 73 and lasted one and a half years. I credit the shorter visit the second time around with PMR with lifestyle changes I made, more exercise, eating healthier, eliminating most processed foods and sugar. I do still have my treats but not like the old days.

One variable in your case was your relapse. The study doesn't define what it means by "permanent discontinuation." Would they consider your experience two separate occurrences of PMR? Maybe your prednisone treatment wound be counted as being permanently discontinued after 10 years including both your first and second occurrence.

My sense of humor had a morbid twist to it. My thought was "permanent discontinuation" was a horrible way to say it because it suggested everyone in the study died.

My excuse for taking prednisone for 13 years was multiple autoimmune conditions along with other medical problems. I would have to be excluded from the study because of too many variables even though my primary diagnosis was PMR.

I think there was some age bias that crept into my treatment. My rheumatologist said I was "too young" to take prednisone for the rest of my life. The comment did give me some hope that I would still get off prednisone after being diagnosed with PMR at the age of 52 and treated primarily with prednisone until I was 65.

So I am off prednisone entirely for 3 weeks at this point and all of the effects that are referred to in the Forum have showed up. Thursday morning I woke up stiff in all the major joints and most surprisingly in the hands and wrists which are toughest to deal with in the morning. By mid morning I have loosened up enough to consider myself OK but not the hands and wrists which makes shaving difficult. I would like to hear from other members of this august group as to whether your Docs review Sed rate, mine is high, and Hgb and Hct. Mine are low enough to classify me as anemic. I try to get moving as soon as possible each day and do CrossFit 2 days a week.