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

Hi @cindyjane and @richardab, PMR and GCA are autoimmune disorders with genetic markers that afflict, most often, those over 50. People with Northern European ancestry, especially Scandanavians, have highest rates of it, and the incidence in the population is about 50 in 200,000 (Cecil and Goldman's Textbook of Medicine). My maternal aunt had it. Our background is largely Southern European, but who knows what our ancestors were up to years ago? My mother in law, predominantly English ancestry, also had Giant Cell Arteritis. With autoimmune diseases, an injury or illness triggers the immune system to go into overdrive and attack other parts of the body. For me, it was an ankle injury, for my aunt, a back injury, and my mother-in-law came down with it after an especially long road trip and family reunion (stress, perhaps?). Please don't beat yourself up over this. Before my diagnosis, I spent a year listening to a podcast about fibromyalgia and tried to love myself more. It didn't help, but prednisone did. I agree with @mary4 who asked you if your prednisone is at a sufficiently high dosage because PMR is usually very responsive to Prednisone. Do you have any headache, tender scalp, difficulties seeing? Giant Cell Arteritis requires a higher dosage of Prednisone. Also, sometimes PMR can be mistaken for an infection, connective tissue disorder, hypothyroidism, or malignancy so if your current dosage of Prednisone isn't really working for you, best to let your doctor know. I hope you see a good Rheumatologist. I was able to get down from 40 mg Prednisone to 0 in a year and a half, with no flareups so far. FYI, everything I've read states not to mix NSAIDs with prednisone. I was told to take tylenol or acetaminophen, two 325 mg pills for pain. I wish you the best.

I'm at 20 mg with Tylenol in the morning. I just wish I could sleep solid. I've had no illness or injury so may be stress.

I was diagnosed with PMR a couple weeks ago and am on 20 mg/day of prednisone. The pain, which was truly unbearable, is MUCH less than before but is still quite evident.

My CRP before treatment was measured at 347 mg/L. My understanding is that levels this high are rarely seen in PMR patients, with levels before treatment more like 40 mg/L being the norm. I also had several other symptom and blood tests that indicate an extreme situation (fever, white blood cell count elevated to 20,000/uL, platelets at 703k/uL, pretty severe anemia, etc).

I'm wondering if anyone else has experience or knowledge of PMR symptoms/blood scores this severe, and how it affected the treatment and prognosis. Thanks.

My ESR was 120 and CRP was also elevated after I had PMR close to a year and had Giant Cell Arteritis. I also had anemia (anemia of chronic inflammation ) and was anorexic - I lost about 15 lbs - was down to 93 lbs. I also got a mild case of shingles, despite having had the Shingrex vaccine a year prior.

@cindyjane, the theory linking PMR to "not loving yourself enough" is curious. I worry that it blames the patient for his or her disease. The very fact that you seek help suggests you care very much for yourself. Good start, it seems to me. This illness provides lots of opportunities for reflection on ways in which we can care for ourselves. I wish you the best.

Hi, Cindy. No victim blaming here. Remove that site from your list of resources, and you'll feel better immediately! If you can, keep moving and doing the things that you love. Get out into nature if you can. There are links in this forum to diet-related suggestions. On NPR website yesterday, I saw an article about self-care that starts with 5 words "What do I need now? - might be a cup of tea, night be a walk, might be yoga, might be a nap. All of these are wonderful. Good luck.

That sounds bad, @tsc. Sorry to hear it.

I also lost 8 lbs in the 3 weeks before I was diagnosed, and went down to 129 lbs (I am 5'10.5" so now very thin). My ESR was "only" 92 mm/hr, so yours was even higher! It's my CRP that reached very extreme levels, about 70x above the upper limit for normal of 5 mg/L. The pain was unbearable. So far, it seems I don't have GCA.

I really hope I don't get shingles!! That is supposed to be awful! I've also had the Shingrex vaccine.

With GCA, you must have had much higher doses of prednisone and had a different treatment than I am expecting. When were you diagnosed?

After more that 2 weeks, the 20 mg/day prednisone I'm taking still leaves me with significant pain throughout the day. It's worse in the morning. I was hoping for a better result, and the idea of "tapering" at this point is terrifying.

PS I'm a 63 year old male with a northern European background.

I was diagnosed with PMR in October 2020 and was put on 20 mg of Prednisone. I am diabetic so my blood sugars rose at which time my endocrinologist put me on insulin shots. Everything improved for 6 months. Then my rheumatologist felt it was time to taper the prednisone meds. At the same time I received my first Pfyzer vaccination in March 2021. I began having muscular aches in my calves. In June 2021 I received my second vaccination. The muscular aches increased. I was concerned that the tapering of the prednisone was too soon so my rheumatologist increased it to 25 mg. There was no change. So I started the taper once again. In Dec 2021 I received my first booster A week later my muscular and achy joints in
My legs increased and walking was laborious. I have continued deceasing prednisone meds and am now on 2 mg a day. My CRP readings are normal yet my mobility situation has not improved. When I sit or lie down I fel normal but when I stand or start to walk mobility is an issue. Is anyone else experiencing what I am going through?

Hi @redboat, I told my rheumatologist there is nothing like the pain of PMR. I called it my astronaut suit of pain and stiffness. And the pain was always worse in the mornings! Not even 45 minutes of stretching in bed or a long walk in the mornings helped it. It eased up a little, but it was still pretty bad in the evenings. I spent a year on the couch with the companionship of an infrared heating pad. The only treatment I got for GCA was 40 mg of prednisone, which I tapered down by 5mg every two weeks, starting in late May of 2021. I was on it about a year and a half. I gained the weight I lost back, and the shingles was a mild case. There is also a medication you can take for shingles if caught early enough. I had a CRP test every month, and only had to go back up to a previous dosage of prednisone once.

Did you talk to your doctor about your pain? Maybe your meds need tweaking. The guidance I've read is to take tylenol (not NSAIDs) for pain management.

I wish you the best and hope your symptoms ease up soon.

Thanks for your kind comments and the background.

My pain, prior to getting prednisone, was 24/7 and SEVERE. There was no stiffness, just intense pain in my shoulders, arms, and hips It was not something I would have been willing to continue living with if I had not found treatment.

Now that I am on prednisone (20mg/day), the pain is worse in the morning (about a 3 or 4 out of 10), and starts to let up around 2 pm, finally going down to something like 2/10 by late evening. Piece of cake compared to what I had before. But it's not ideal - I used to exercise regularly and be very active outdoors. I'm reduced to taking gentle walks.

It's not clear to me that my rheumatologist understands how severe my case is. She did not interact with me until I had already been on prednisone for about 5 days - my PCP made the original diagnosis and gave me a prednisone prescription, then referred me to a rheumatologist for long term treatment. The rheumatologist is already talking about "tapering" while I'm still in a fair amount of pain! Terrifying! (My PCP assures me that won't happen.)