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

Sorry to read about your experience. I'm just 52 and was diagnosed about 7 months ago. Before this, I'd had no notable health issues.

After the diagnosis, my rheumatologist initially prescribed 20 mg of prednisone daily for a week, then recommended that I tapered to 15 mg daily after a week. I continued to feel some pain but with much improvement after a week, but the weekend after my taper to 15 mg, I experienced excruciating pain, needed my wife's help getting out of bed, and could barely walk, which was initially terrifying. However, my rheumatologist then recommended that I increase my daily dosage to 30 mg, and split the dosage to 20 in the morning, 10 in the evening. He held me there for 4 weeks or a month, before recommending a slow, steady taper every 2 weeks by (as I recall) 5 mg daily until I got to 20 mg daily, then by 2.5 mg daily every 2 weeks until I got to 10 mg daily, then by 1 mg daily every 2 weeks until I get to zero. For me, the higher dosage and the split dosage with the taper above has worked well, aside from a single flare-up a couple of months ago. I'm now at 5 mg daily (3 in am, 2 in pm) and due to taper to 4 mg daily on Tuesday, and hopefully I'll be to zero in mid-February. I personally hate being on prednisone, because I hate feeling medicated, but the results are undeniable, and I do not want to experience another flare-up.

Coincidentally, and related to your question, I've also experienced irregular pain in my right knee (from an injury when I was 20) and in both shoulder joints sporadically over the past few months, which I've assumed to be PMR-related. I've seen an increase in the pain level recently, with the lower temperatures (I live in central Ohio). In my follow-up appointment with my rheumatologist this week, he advised that those pains are likely arthritis-related, not PMR-related. This surprised me, as I've had some joint pain in past years (before the PMR diagnosis) in the winter, but nothing quite at the current level, and not in the shoulders, as I recall. So good news is that the taper is working as planned, but bad news is that now I apparently have arthritis! I asked if the prednisone or PMR could aggravate or activate arthritis, and he said no.

I hear you on the "just getting older". Shortly after the onset of seasonal allergy season for me this past March, I woke up feeling initial PMR symptoms (tight and painful shoulders, hips, and hamstrings) and initially shrugged it off as me slipping on my fitness/exercise and "getting older". Even after a few weeks of exercising/stretching more, and taking ibuprofen at night, the pain kept worsening, and started asking more questions of my PCP, who eventually got me to a rheumatologist, about 6 weeks after my initial symptoms. I got pretty lucky.

I've been on prednisone for PMR for just over 7 months now, and am generally doing well, hoping to be completely off prednisone in mid-February.

While I understand that joint pain is common for folks my age (52) when the weather gets colder, and I experienced it before my PMR diagnosis, this joint pain seems noticeably worse, but manageable, this year, and I'm getting it in my shoulders, when I haven't in the past.

Has anyone else seen increased joint pain in the first winter after their PMR diagnosis? I'd assumed that PMR and/or prednisone was causing it, but my rheumatologist advised that this is likely unrelated arthritis pain.

I had a similar experience with osteoarthritis while on prednisone. I knew I had a "susceptible" left hip because of prior issues with it in my 50's, but I started exercising more and eating a little healthier, although I'm a registered dietitian and my diet is full of anti-inflammatory foods (primarily organic whole foods, plant-based). That kept my hip pain at bay for many years. I ended up with a hip replacement during the COVID years. BTW, my PMR started after my second Pfizer vaccination. I have also had some issues with wrist and hand pain over the years, but am pretty much pain free now and my right hip looks great, according to my doctor. Note that I also take turmeric with black pepper and omega-3 supplements daily, which seems to be helping my hand/wrist arthritis. Hope this helps you.

Thanks for the feedback, and I apologize for the delayed thank-you.

It is interesting about many posters have experienced similar problems that seem connected to the timing of Covid shots. I got the J&J 1-shot dosage in late April 2021, a booster in December 2021, and another a year ago today.

I had an apparent seizure in July 2022 (7 months after the 1st booster), after which I had extra cardiology and neurology exams, which all came back normal. My initial PMR symptoms appeared roughly 3 months after my 2nd booster. I can't be sure that the shots had anything to do with it, but I had no previous health issues to that point, and my neurologist advised me that he didn't believe that a link between PMR and the shots could be ruled out categorically.

I'm a little concerned that initial PMR symptoms and my last flare-up coincided roughly with onset of seasonal allergies in late March and a "secondary" ragweed allergy season in mid-October. I've mentioned to my rheumatologist to get his advice on that concern.

How do you take your turmeric and black pepper? Do you take as a supplement, or include it daily with a meal?

Best of luck to you and thanks again for your reply!

My doctor said she couldn't rule out the connection between the onset of PMR with the COVID vaccine. I had the Pfyzer vaccine and my onset started with days of my second vaccination. When I did get COVID it did cause a flareup of my PMR, after I had successfully weaned of prednisone. I attribute my mild symptoms to my diet hight in anti-inflammatory foods and also the supplements that I take. I take the turmeric Youtherory brand from Costco. It has 2250 mg of turmeric (95% curcuminoids) plus 22.5 mg. black pepper for enhance absorption. the suggested dosage is 3 tabs a day, but i just take one in the morning and one at night. I also take omega-3's from an algae source (this is where fish get their omega-3's). I worry about mercury contamination from a fish source. I also take 2 tabs a day of this. It is near impossible to get enough omega-3's in the typical American diet. Hope this helps.

Thanks very much! I go to Costco regularly, so I will seek out that supplement during my next visit 🙂

I have had PMR for over a year. Started with 20mg Prednisone. Down to 2.5 for second time. Tapering not going as planed. My #'s went back up for a second time to the beginning.

Hello @grandpa4, Welcome to Connect. A lot of us PMR old timers can relate to your journey with PMR. When it comes to PMR, that old quote "the best laid plans of mice and men" always comes out. Each of us are a little different when it comes to tapering but the one thing I think we all have in common is slow and easy wins the race. My rheumatologist suggested a tapering plan with the caveat that I listen to my body and only taper down on my own schedule. He recommended I keep a daily log with my pain level of 0 to 10 along with my how much prednisone I was taking that day. Then when it came to taper if my pain level was too high I would go another week or so to see if it came down. If it did come down, I would taper down to my next lower level. If not I tried to adjust by going up half of my last taper down so as not to go all the way back to the previous dose. My pain threshold for tapering was anything below a 2 but that is subjective for each of us.

Do you keep a daily log of how you feel, new symptoms, etc?

I have not kept a log but that is a good Idea. I have an appointment with my Rheumatologist on Mon. At 2.5 MG the pain in my hands is had gotten pretty bad. My shoulders are not hurting anymore .My hips are stiff but I can live with it. At this point I have lots to discuss with the Dr.
Thanks for the info@

I have had 5 covid shots, the last one was in Sept 2022. A month later I
was diagnosed with PMR. All my Rheumatologist said to me was "we are all
guinea pigs". I believe I always had PMR but it manifested itself from the
shots. Can't look back. Moving forward.