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

This support group is a wealth of information and learning from each other --- Not knowing a lot of info about PMR such as why - where - how did it all come about with no cure --------------- has the Mayo Clinic done any survey's to search the history, life style, environmental surroundings, living regions and etc. of those who have PMR ??

This support group is a wealth of information and learning from each other --- Not knowing a lot of info about PMR such as why - where - how did it all come about with no cure --------------- has the Mayo Clinic done any survey's to search the history, life style, environmental surroundings, living regions and etc. of those who have PMR ??

Hi @wv54, from what I've read, in Cecil and Goldman's Textbook of Medicine, PMR is an autoimmune disorder with certain genetic markers that usually strikes people over 50 at a rate of 52.5 per 100,000 people annually, women more than men, and Caucasians, especially those of Northern European Ancestry. My ancestry is about 75% southern European, but a maternal aunt also had PMR and GCA, as I do. (About 30% of those with PMR develop GCA). My PMR started a couple of days after I injured my ankle, my aunt's started after she hurt her back. Bayord Horton and other doctors at the Mayo Clinic did groundbreaking work on GCA and performed the first temporal artery biopsies, which became the diagnostic tools for identifying GCA. In the 1950s, Horton found that steroids could be used to manage the symptoms. I am grateful for this as my life would have been hell without prednisone. I always exercised, ate plant based diet, etc. and was almost fanatical in pursuing a healthy lifestyle, so PMR and GCA were humbling shocks. I learned I may have some control, but not total control, over my body.

This type of survey or study is referred to as the incidence and prevalence of a disease. Searching for the term "incidence and prevalence of polymyalgia rheumatica" in an Internet search shows several study results. Here is a systematic review that will help answer some of your questions, @wv54.

- Incidence and prevalence of giant cell arteritis and polymyalgia rheumatica: A systematic literature review https://www.sciencedirect.com/science/article/pii/S0049017220302043

Thank you for the info --- those of us who grew and lived as 'boomers', the FDA wasn't around that much -- in the rural areas (where I grew up) - our diet wasn't the best -- I know where I live the water is loaded with manganese and so many people back then had lead pipes and etc. ---- just thinking where ever this came from and trying to prevent others from getting it ----- I have never hurt so much in my life ----- miserable ------ again -- Thank You very much for the info ----

You're welcome, @wv54. I told my rheumatologist that there is nothing like the pain of PMR. I felt like I was wearingt an astronaut suit of pain and stiffness from the neck down. The proper dosage of Prednisone is supposed to make symptoms disappear - some refer to it as miraculous. I hope you are getting good medical care.

My RA is young BUT very thorough -- I was down to 5 mg of prednisone -- last visit I mentioned pain now in my hips and tops of both legs -- prednisone was increased to 7.5 mg -- got a feeling it will be increased again ?? -- my RA had the temple biopsy done as a precaution -- came back negative ----- the RA did mention increased cases of PMR in our area

My PMR symptoms stopped but gave way to symptoms of Giant Cell Arteritis - head and neck pain, trouble seeing out of one eye, and anemia. Did the increase to 7.5 mg help your symptoms go away?

A little recap -- mine started out with neck / should pain middle of September 2021. Usually 2 times a year I get seasonal sinus infections and I thought it was my autumn / fall infection kicking in ---- but then the head ache came -- I thought the back of my head was going to blow out -- then my arms hurt to the touch -- got in to my pcp -- he automatically thought pmr and prescribed 40 mg. -- Two days later the symptoms were gone and I had a appointment with the RA specialist. She agreed with the issue and dosage. I was then scheduled for the temple biopsy and it came back negative --- BUT, I am prediabetic, my sugar would go to 300 about 2 hours after taking the prednisone. -- I took it upon myself to begin cutting back on the prednisone. BUT now my hips and tops of my legs are painful / aches -- the 7.5 mg of prednisone has not helped hips / legs. ------ shoulders / neck / headache are all ok --- last lab results Jan 2022 showed blood work / sed rate still a little high along with little high c reactive protein -------------------- have not had any vision problems

I go for a CRP test monthly. I hope you can find a solution because it's terrible to be in so much pain. It may be the dosage of prednisone you're currently taking is too low to control your symptoms. I wish you the best. Take care.