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

I too have Hashimotos, the theory is that if you get one autoimmune disease you will get another!

@vjs Celebrex is a nonsteroidal anti-inflammatory drug (NSAID).-- see screen shot below from PMRandIL6.com . the slides and two talks in here are VERY INFORMATIVE , if you have not already seen them. i wasted one month pre Dx taking Advil !

"getting much more pain this week." - can you be more specific ? - for me the unacceptable * aspect was prolonged morning stiffness of shoulders/arms ( much more so than hips /legs) and unpredictability of the duration. i could track that 2 days after doing something, that in the before-times was not "strenuous "- like blow drying my hair, made me feel much worse !
*My dose was increased from 20 mg to 30mg !

I believe my first Covid vaccine brought on PMR for me. My wife also developed Crohn’s shortly after her first Covid vaccine. We are both healthcare workers and we’re required to do the vaccination. I am an orthopedic surgeon and she is an orthopedic RN. I had no joint pain complaints symptoms prior to my Covid vaccine.

Almost every joint, at one time or other. They seem to make the rounds. First was toes, ankles and knees, then shoulders and arm pain, Now it's in my neck, and hips mostly. I had rapid unexplained weight loss with my first episode, along with leg pain and even swollen toes. Sometimes the wrists will be involved. Lab results confirmed the diagnosis. Prednisone really helps and I try to limit it, probably too much. I would feel better if I took more.

My rheumy said pmr is basically bursitis of the joints. Diagnosed in April and started in 10 mg which I combine with hbot and use of a pemf mat, both of which are known to help with inflammation etc. helps a lot. At it’s worst, I was ready to cut off my arms. Also getting up even from a chair was not only physically hard but mentally draining as I had to think through every move and then tell myself “now go.” Past that and hope forever. Best wishes.

Hi, I am newly diagnosed with PMR and these were my symptoms. At first I experienced stiffness in both my hip joints which I attributed to too much exercise (vigorous snowshoeing in VT in early Feb.). Then I continued to walk 3-4 miles a day. Late Feb I was still very stiff in hips but blew it off to age and exercise. Went to Egypt in March and noticed that getting on the bus for tours was very difficult (lifting my leg on that first step was not pretty). By the time we returned from our trip in early April I knew something was not right. Taking NSAIDs gave me some relief but not enough. Two orthopedic surgeons said I had osteoarthritis. By beginning of May pain had settled into both hips, upper thighs, shoulders and neck. My husband had to help me out of bed. After a blood work up I was finally diagnosed by rheumatologist with PMR. The bilateral aspect of the pain seems to be a red flag too. Not sure about the question of your sed rate and CRP being normal but I have heard that it can happen and you can still have PMR. Prednisone has been a game changer for me. At moment I am tapering from a beginning of 30mg to 17.5mg now with the goal of 0 in a few months. No side effects as yet, having blood work done every month, seeing rheumatologist every month. Also taking lots of supplements (Calcium, vit D, vit. K, Pepcid) along with anti inflammatory diet. Have you seen a rheumatologist? Good luck with this journey and have patience.

I hope that you get the care that you need very soon! I'm just 52 and the symptoms of PMR for me (just a couple of months ago) were initially very jarring, needed help out of bed, mobility was poor, pain was often unbearable, particularly in the mornings. This forum has definitely helped me understand what I'm up against, and that it's different in some ways for everyone. At the moment, I've been symptom-free for about a month, but I was in a very different place a month ago. But once my rheumatologist got me on the correct dosage of prednisone (guessed too low initially, for the first 2 weeks), it's been very good, almost a different world. I've been advised to start tapering my dosage tomorrow, so hopefully by early next year, I'll be off the prednisone completely. I'll just have to hope that it all works out and, if it doesn't, I'll just have to try something else and hope that that works instead.

Yes, it was a rheumatologist who last year said I had Fibro. Just wondering if it could be PMR instead so guess I should ask for blood tests again.

Those were pretty much my dad’s symptoms, except he had a little more mobility in his shoulders. I have fibromyalgia (and I am 40), and we learned that a few things that distinguish PMR from at least my fibro are: Age (Fibro can happen at any age, but as you know with PMR, it’s usually with people who are older, sudden onset—it is usually sudden and suddenly severe and functionally limiting, i.e. can’t get out of bed all off a sudden, and it gets worse quickly without treatment—and there’s pain in mostly the “large muscles” (shoulders, hips, core). Also usually, but (annoyingly) not always ESR and CRP blood tests are elevated. He also has “early morning stiffness” that lasted until early afternoon. In his presentation, the fatigue was the most debilitating.

It might be worth talking to your rheumatologist again and asking if it might be PMR or something else, especially if you’re in a lot of pain? There are so many different types of inflammatory arthropathies that it seems like it could be easy to accidentally pick one over the other, even for someone who’s aware it may not be top of mind. I have a different inflammatory arthritis, and I was evaluated at Mayo Rochester, and the then-fellow and now rheumatologist whose area of expertise is my condition, missed the diagnosis. So it can happen sometimes.

I hope you feel better soon.

Hi. It’s so nice to hear a more positive story! If your symptoms just started in February, it seems like you’re making very fast progress without too many setbacks. My symptoms started in March and my Rheumy initially gave me the one week tapering dose pack and since that worked immediately, she then put me on 6 mg of Methylprednisolone rather than Prednisone. I just tapered to 5 mg yesterday and so far so good. My labs were never elevated and I did not have morning pain, but I had all the other PMR symptoms which were alleviated by the steroid. I also have ongoing back issues (stenosis, etc). The steroid masked that pain, but with the lower dose, I’m already having periods of back pain. ‘Hope you continue to taper easily!