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

Hello all. My name is Jeff from Australia and I have recently been diagnosed with PMR. It likely started around December 2020 although may have been lurking around earlier. From Christmas, my joints started to become painful and stiffen, particularly in the hips, knees and shoulders. It eventually progressed to elbows and even my bicep muscles. I saw my GP on Jan 21st as the stiffness and pain were starting to impact my routines/life. Due to the difficulty of getting into my regular GP again I went to a “walk in” GP to have blood tests done. These came back with a slightly high CRP (55) and as we were waiting on other tests it was another five days before I was called back in for them. That GP said he didn’t know what it was so I said well are you saying I have to live with it and he shrugged his shoulders. Needless to say I won’t be seeing them again. In the meantime I tried two acupuncture sessions to no avail. This eventually led to finding (thanks to my wife) information about PMR and pretty much self diagnosed myself. At this point I could barely walk and couldn’t dress myself. I printed a Mayo document on PMR to take into my GP on the 8th February appointment in case she didn’t come up with the possibility of PMR. Fortunately she did and put me on Prednisolone, 50mg. Within five hours I was close to walking semi normally. As I had been on Prednisolone many years ago for an unrelated issue I was aware of its hazards. Although the GP said to take 50mg for three days I decided to drop the second days dose to 25mg and phone the doctor. I already had the dosage and weaning schedule so I suggested to her to start the following day on 15mg for three weeks then 12.5mg and so on. Into my second week on 15mg now and I am getting up with only slight discomfort in hips and shoulders for the first hour or so. I am increasing my vitamin D3 and still taking Caltrate bone and muscle daily with vitamin B12 twice a week. See a rheumatologist in June as that is the earliest I can get into one. I will also talk with the GP regarding taking Fosamax. Thanks for bearing with me with the long post.

Hello all. My name is Jeff from Australia and I have recently been diagnosed with PMR. It likely started around December 2020 although may have been lurking around earlier. From Christmas, my joints started to become painful and stiffen, particularly in the hips, knees and shoulders. It eventually progressed to elbows and even my bicep muscles. I saw my GP on Jan 21st as the stiffness and pain were starting to impact my routines/life. Due to the difficulty of getting into my regular GP again I went to a “walk in” GP to have blood tests done. These came back with a slightly high CRP (55) and as we were waiting on other tests it was another five days before I was called back in for them. That GP said he didn’t know what it was so I said well are you saying I have to live with it and he shrugged his shoulders. Needless to say I won’t be seeing them again. In the meantime I tried two acupuncture sessions to no avail. This eventually led to finding (thanks to my wife) information about PMR and pretty much self diagnosed myself. At this point I could barely walk and couldn’t dress myself. I printed a Mayo document on PMR to take into my GP on the 8th February appointment in case she didn’t come up with the possibility of PMR. Fortunately she did and put me on Prednisolone, 50mg. Within five hours I was close to walking semi normally. As I had been on Prednisolone many years ago for an unrelated issue I was aware of its hazards. Although the GP said to take 50mg for three days I decided to drop the second days dose to 25mg and phone the doctor. I already had the dosage and weaning schedule so I suggested to her to start the following day on 15mg for three weeks then 12.5mg and so on. Into my second week on 15mg now and I am getting up with only slight discomfort in hips and shoulders for the first hour or so. I am increasing my vitamin D3 and still taking Caltrate bone and muscle daily with vitamin B12 twice a week. See a rheumatologist in June as that is the earliest I can get into one. I will also talk with the GP regarding taking Fosamax. Thanks for bearing with me with the long post.

Hi Jeff,
Welcome. You will be grateful for finding this blog and hearing the stories and wisdom along your journey. You were wise to print off a Mayo document and take it in. I was diagnosed with PMR, August of 2020 after retiring from the CDC. I was quite sure that I had PMR, although I did question at first whether the pain was a result of my osteoarthritis. I went to 2 different GP's, one that wasn't even sure what PMR was and the other one that said I couldn't possibly have it because my ESR and CRP were in the normal range. I too, had to take information showing that around 20% of people have normal values and that the diagnosis of PMR should not rest on these inflammatory markers. I was able to find a rheumatologist that concurred with me. She put me on prednisone and I have been tapering down, now at 3 mg. I don't ache like I did, although a bit stiff. I try to do yoga 3 or 4 times a week, exercise everyday and eat for the most part an anti-inflammatory diet. Hoping all that helps. Just a word of caution - be careful about tapering too quick. My dexa scan did show that i have osteopenia so I take bone strength and walk with a weighted vest. Trying desperately not to take fosamax, but may have to one day! I wish you well.
BTW - I have had both of my moderna shots and so far so good for those wondering about the covid vaccine!

here is my insight today..i trained at a hospital that had a very solid rheumatology service..but i never saw a case of PMR..GCA many cases easily diagnosed and treated..but PMR is really an outpatient disease so a doctor in training doesn't see this often unless he is a rheumatology fellow..having said that when one has joint pains you just dont want to run to the doctor and you write it off as just getting old or garden variety arthritis..even i as a physician did this and delayed my diagnosis..after self treating with a medrol dose pack and getting better i did not pursue my symptoms until they recurred..with this history any rheumatologist worth his salt could make the diagnosis..moral of story is if you are over fifty and have sudden onset of joint pains, see a rheumatologist

Thank-you for the update on the vaccine!! It's funny. So many of us seem to fall in the 20% group of ESR and CRP being in the normal range, yet suffering from PMR (don't you love all these acronyms???). Maybe the percentage is a little higher???

I think "sudden onset" is the key phrase to describe this disease. Suddenly stiff and in pain in my case coincided with a very strenuous exercise routine. This misled me for a while but when it got worse and not better after 8 weeks I really wondered what on earth was wrong with me. My PMR journey is posted here so I won't go over it again, but I did see my PCP who sent me to a hematologist but I still went undiagnosed from early July until October 20. When my upper arms started hurting and I couldn't put my hair in a pony tail I knew something was up

Thanks all as usual for this dialog. It seems to connect to my first post of a few months ago as my rheumatologist also seems to fall into the school of thinking that considers normal CRP's and Sed Rates as proof that PMR is not really (clinically) indicated. That said, he is eminently aware of my discomfort and truly believes that I am not making it up as I continue to feel better as I titrate down from 20 mg to 7 mg...hopefully one mg lower in each of the coming months. But back to the school of thinking....I believe that, by definition, symptoms of PMR occur in (mostly) 70+ Caucasian females and males, and often presents with pain, stiffness, and swelling in the joints & muscles of the hip and shoulder (girdles). But a normal ESR/CRP (which I have been running for 4 months) is indicative of no such swelling in the joints? I'd add that I have been managing Ankylosing Spondylitis for almost 50 years with considerable pain early-on, but very little redness or swelling.

So what is a rheumatologist to do? 20% of us cannot be psychosomatic. I've got a DEXA scan next week and will report any interesting findings. Hope all are doing well under what is shaping up to be another trying year. Before being laid-off from a wonderful consulting job a few weeks ago, I used to tell my working associate to practice Project Team Social Distancing (or PTSD as I call it).

Agree to these insights. And bilateral. I’d like to add that it got progressives better by the end of the day, every morning was like Groundhog Day, here we go again. And I had muscle “ cramping “ best way to describe, in the most unusual places, and strange discomfort tin the saddle area. I think this is the neuro component of this disorder.