How were you diagnosed with PMR ? How are you currently managing?

Greetings from Dunedin, New Zealand. My name is Carol and I have lived with Polymyalgia Rheumatica since March 2024. I was formally diagnosed by Doctor Susan Grindley (my GP and her colleague Dr Fran Templar) following CRP tests and symptomatic indications including near full bodily stiffness and a pain level of 7.5-8.5/10. My CRP levels showed 150 which shocked me to the core as it was unknown to me. From then on I was put on Predisone 20mgs for nearly four weeks to get the symptoms under control and me pain free. Since then I have been on Predisone attempting to reduce under the guidance of my GP and plus my background as a Retired Nurse with knowledge of both medications and treatment protocols. Since 2024 my quality of life has decreased somewhat with constant pain dealt with by taking "As necessary" Codeine 15mg 1-2 tabs. Frequent attacks of fatigue and tiredness occur. Recently I manifested headaches along one side of my head in the region of the right temporal artery and referred to the Rhumetologist at Dunedin Hospital who ordered a full ultrasound scan of both temporal arteries. The results came back clear (much to my relief) but if anything should arise in the future I will be in the system. I am aged 73 but behave as a young at heart 60. I have days however where l cry and mourn out of frustration at the loss of my quality of life. I am at present recovering from a major break through attack of pain 5-5.5/10.

@tauca838

Greetings from the USA. I actually did a trans-Pacific cruise to Australia last year. We were supposed to stop Tauranga, NZ but we had to stay in the harbor and couldn't go ashore because of the weather. I heard and could see that New Zealand is beautiful so I would like to return someday. I liked Sydney, Australia and the surrounding area. I want to return to Australia too. Maybe a cruise from Australia with port stops in New Zealand would be nice. The fact that I did the trans-Pacific cruise was monumental. It was the first time that I was in the southern hemisphere.

Very good account of things. I can tell you were a nurse. I can relate to everything you have said. I don't know about the codeine though. Nothing wrong with it but I have never known it to be prescribed as an adjunct to prednisone to control PMR pain.

I like that you are "young at heart." Sometimes I think a 1-10 pain rating scale doesn't capture the "quality of life" aspect of PMR. I used to tell my rheumatologist that I'm only 60 years old but I felt more like a 150 year old person with rigor mortis. On an age related scale that would be off the chart.

People often describe the onset of PMR symptoms as, "I feel like I have suddenly aged." I wasn't screaming in agony which was what a 10 on the 1-10 pain scale is supposed to be. I couldn't lift my arms without a lot of pain in my shoulders. However, my doctor could lift my arms for me and that did not cause that much pain. Passive range of motion was okay --- It was more like I couldn't move myself without a lot of pain.

I'm now 72 and was originally diagnosed with PMR at the age of 52. I took Prednisone daily for 12 years. There was the initial aging effect from PMR. After I took Prednisone, I felt younger than my age of 52 ... maybe 40. That would equate to twelve years younger on the age scale.

The feeling of being young again went away when I developed cardiovascular side effects from Prednisone. Frequent attacks of fatigue and utter exhaustion crept in. My very first somatic complaint other than pain was "exercise intolerance." That was a shame because I used to enjoy anything that required a lot of endurance and stamina.

I used to consider myself "better than average" for my age. Now I'm 72 years old. I feel like an average 72 year old person with more than my fair share of medical problems. Most of my medical problems are attributed to "decades" of prednisone use along with rather severe osteoarthritis. Fortunately, after I switched to a biologic about 7 years ago -- I started to feel a lot better. The last 5 years have been "reasonably good" years since I tapered off prednisone.

Hello @ajf1950 and @tauca838, I would like to add my welcome to Connect along with @dadcue and others.

@ajf1950, Here's some information from Mayo Clinic on diagnosing and treating PMR - https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545. The Arthritis Foundation also has some good information to explain some of the problems diagnosing the condition.

"PMR is challenging to diagnose because many other conditions have similar symptoms. Doctors often use ultrasound imaging to help pin down a diagnosis. Another way to confirm that it’s PMR instead of, say, osteoarthritis (OA) is to start a course of the corticosteroid drug, prednisone. PMR almost always gets better with prednisone within just a few days. Prednisone can have serious side effects, though, so this should only be tried when the diagnosis is pretty clearly PMR and after you have a thorough discussion about the pros and cons of prednisone with your doctor."
-- Polymyalgia Rheumatica: https://www.arthritis.org/diseases/polymyalgia-rheumatica

@tauca838, I used the 1 to 10 pain scale for both occurrences of my PMR and definitely agree with @dadcue that it doesn't capture the quality of life aspect of having PMR. I'm almost 7 years in remission from my last occurrence of PMR and at age 83 I'm hoping it stays gone as my other aches and pains from degenerative arthritis, neuropathy and other conditions are keeping me challenged with daily activity.

There are many different discussion topics in the PMR Support Group that you may also find helpful. Here's a link to the list of discussions - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

There is not an off the shelf diag. Basically if you respond to prednisone and you have the classic symptoms of PMR is usually pretty accurate. However back in 2016 they tested me for all kinds of diseases and island infections (as we just came back from the Dominican) before a rheumatologist nailed it.

I am guessing that you presume its PMR. We can all attest to some level of discomfort but we are all completely different. I presumed I had PMR and went to Mayo clinic endocrinologist. Diagnosis was more of what it is not. Diagnosis might end up being the fact that corticosteroids work. For me that was within hours.

@johnbishop
When I was diagnosed in March with PMR I was put on 25mg prednisone and not only did it relieve most of my PMR pain, but also most of my osteoarthritis pain, which came roaring back when I had to taper off prednisone due to SMM. I just had shot #7 of kevzara two days ago and I'm hoping it kicks in soon. It won't help the osteoarthritis though.

I was diagnosed by labs. 3 yrs ago. Started on Predisone & did not like it. Have been on monthly infusions of Actemra. It helps. Trina

@johnbishop
My husband has not yet been 100% diagnosed. He is going on his 4th month and has an appt this coming week. He has all the symptoms of PMR and is on 20mg prednisone and is not getting much relief. He has lost about 15-20 lbs. and does not sleep. His platelets are low as well as his iron. He has had two iron infusions within the last 2 weeks and has not improved physically. Last test was an MRI so we will see what the results are if that this week. His PC put him on prednisone initially a step process, this was back in July . It went some like 5 10mg for like 2 days, the second day he was dancing. Then down to 4 pills for two days and so forth. He has been on 10 mg and was increased to 20 mg not much change. He is 76 and has not been able to do what he usually does like working in the yard, lifting it all is hard due to the neck and arm pain and stiffness.

@ajf1950

Taking five 10mg tablets of Prednisone (50mg) will make you want to dance even when you can't dance! Insomnia is another side effect from Prednisone.

I started out on Prednisone just like what your husband is taking. My rheumatologist said, "Find a stable dose of Prednisone that works and let her know what that dose was." I reported back to her that 30 mg worked "reasonably well." She checked my CRP and ESR labs and said they were still elevated on 30 mg of Prednisone with a frown on her face because she was worried. She instructed me to take 35 mg and said I would need Prednisone for a long time and things could be difficult.

I had multiple problems when I was first diagnosed with PMR. I suspect your husband might be the same. There is no rule that says you can't have something else in addition to PMR.

My story is that I’m 58 and very active all my life, playing tennis, road cycling and hiking and felt great until in July I began to get the awful heavy arm stiffness which spread across shoulders and then down to hips and hamstrings and I felt like I had suddenly skipped 15 years and become old. Luckily I got to see a rheumatologist who was experienced with PMR and quickly got diagnosed after a week on 20mg of Pred. Fast forward two months and now I’m on 10mg and feeling more or less my normal self apart from some anxiety and foggy brain feeling sometimes. Physically I’m continuing my usual activities with perhaps some small tweaks. I’m also eating better and cut down on alcohol.. I’m hoping to start tapering down to 9mg in the next week or so (although rheumatologist doesn’t know that as he wanted me on 10mg until Christmas!) I think we know our own bodies better than anyone and I’m prepared to experiment a little with dosing of Pred and try to find a lower level that keeps the dreaded PMR demons at bay. Then of course the adrenal issues can be another hurdle when you get lower on Pred but I’ll sorry about that when I get there . So yeah to answer the initial question, it seems like Pred is the accepted treatment, certainly initially. I hate taking the stuff but it’s either that or trying to fight PMR pain on a daily basis until it decides to go away. I think staying positive and staying active are really important, especially if you have always been used to being active.. good luck 🤞