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

Hello! New to PMR, on prednisone 15 mg to start. I love to have a glass of white wine every now and then. How does prednisone and wine cohabit? Also have Panic/Anxiety Disorder, I take Xanax when it gets a bit rough, along with daily antidepressants. Having taken prednisone for asthma before, I do get irritable. Does Xanax and prednisone play nicely together?? (Note:playfulness in wording helps me cope)

I'm a 52 year old male, and just got diagnosed with PMR about 10 days ago, about a month after my initial symptoms. I had never heard of PMR before then. Around late March/early April, around the annual onset of seasonal allergies for me, I woke up one morning with unusual pain and tightness in both shoulders and hamstrings, which seemed odd, because I had not gone running or exercised in over a week, because of a calf strain. I assumed the pain was because of lack of exercise/hydration, so I started doing pushups, hamstring stretches, and a plank every morning before work, for about a week, and also boosted my water intake and took a couple of ibuprofen every night. The exercise stopped so I could attend to a family emergency for about a week, but I continued using the ibuprofen. About a week later, I concluded that I needed to see a doctor, because symptoms worsened. My PCP requested bloodwork, which led me to a rheumatologist appointment. I feel extremely lucky to have benefited from 2 canceled appointments (and patient schedulers who I called daily to check for cancelations), which moved me up from early July to last week. My doctor prescribed a tapered prednisone, starting at 20 mg for a week, 15 mg for 2 weeks (current dose), and 10 mg for about another month. I saw improvement for 2 days, then had 2 very rough mornings, when my wife had to help me out of bed and walk to the bathroom. Since then, I've seen some overall improvement, nothing dramatic, but I don't seem to be getting worse.

I've continued to push-mow my lawn, which is hilly and about a 90-minute chore, which accounts for the bulk of my exercise these past 2 weeks. I'm hoping that maybe my bad weekend last week was because of a softer guest bed I slept on, which provided less support, but I may know more tomorrow, since I mowed yesterday, and last week's severe morning pain came 2 days after I mowed. And I've been back in our normal bed all week.

Up until April 2022, my wife and I had maybe 2 colds combined in 7 years, but we got colds that month, then got Covid late April 2022. We both had mild symptoms, and it seemed like a 48-hour cold, although we both continued to test positive for about a week after we felt better. Then I had an unexplained episode last July, which I assumed was a seizure (which I'd never had), but multiple cardiac and neurological tests came back normal. Then I had an unexplained leg rash last fall, which went away with steroid and ointment treatment within a week or so. My wife and I both got Pfizer Covid boosters in January. My shots in 2021 were a J&J shot in April and a Janssen booster in November 2021. I find it interesting that so many on here developed symptoms after Covid shots. For my situation, I've wondered if there is a Covid or Covid booster connection.

I know this is early in the treatment, but is it typical for initial treatment progress with prednisone to be erratic, i.e. 2 decent days, 2 bad days, 2 improved days, 3-4 days of little/no progress, etc.? My wife and I usually eat sensibly, but our diet this week has probably been my healthiest ever, so I think we have the diet part covered for now.

I am in remission after 4 or 5 attempts over 5 years to get off prednisone . I started a drug the needs to be compounded into 4.5 meg it's called LDN (Low dose naltrexone) it's a game changer for me. Doesn't work for everyone but my doctor and his wife who is a naturopath suggested it two years ago August and I have not had a flareup. I still don't know where the PMR came from all I know almost sent me to a nursing home i'm 68 years old and live in Hawaii.

Dear - I remember your comment about and worsening symptoms 2 DAYS LATER- I could be you ! I am a 66 yr old female in the Boston area. While keeping a pain journal rehabbing from a tweaked knee in Feb , aqua PT appointment did not begin until April. This is when I started to note bilateral pain in arms AND legs ! Fast forward to to a visit to urgent care mid April after a session using the bike at PT - My pelvic girdle/legs had terrible pain in morning 2 days later . I saw PCP at end of month , Rx for 15 mg Prednisone , which improved greatly the lower extremity morning stiffness. I also had a fortunate and timely-scheduled Rheumatologist appointment by May 22. She increased to 20 mg this past Monday, but as of yesterday we had to increase to 30mg and voila - this morning is the first time I have NO morning stiffness in 1.5 months ! My pain journal has two additional times at least where 2 days after using my arms above my head, the shoulder morning stiffness worsens and is prolonged into he mid day or even later! One time was blowdrying my hair plus doing pruning on a shrub taller than me ( so reaching up A LOT). When I was doing low- Impact Zumba for my knee , pre-Dx , I thought -well there’s nothing wrong with my arms -so I was waving them all-around to the music. Your comment about using a push mower uphill -do you also live in New England ! LOL . Are you willing to ask the same question i did - if the goal is to be where i was BEFORE PMR - then the Prednisone dose is not getting me there .

I'm sorry to hear that your pain keeps coming back. My doctor advised me 8 days ago to increase my dosage to 20 in the morning and also take 10 at night, and splitting the dosage (at least for now) seems to have worked. Mornings have been pain-free, although I'm still not "back to normal" yet. I still have some hip tightness and minor shoulder pain that still prevents side-sleeping, but I had not flare-ups 2-3 days after yardwork on the new dosage like I had on the lower, "un-split" dosage. We'll see what the next week brings, but if it goes well, I suspect my morning dosage could be tapered, then I'll keep my fingers-crossed! I'm not sure if I'll need to adjust to a new normal.

I actually live in central Ohio, where there are few hills, but our yard just happens to be hilly, the only one like that on our street. I guess mowing has been making up for all of the running that I haven't been doing lately! Hope to get back to running soon.

Hello friends, I am new to this PMR support group having just been slammed 2 weeks ago with the disabling pain (neck, shoulders, back) and now working through a pred taper which is not working very well (so far). But as a newbee, I realize that patience will be the hallmark of a long journey back to wellness.

The irony in my case (though I’m sure all those afflicted have their own ironies) is that I’m an immunologist (research/author) having worked, written and lectured in the field for the past 35 years (of a 55-year career in healthcare) and just completed a book (just prior to my PMR diagnosis) entitled “The Paradox of the Immune System.” It’s a comprehensive text, but I think the gods of immunology punished me for only briefly describing PMR and not giving it sufficient attention (mentioned only twice in 300 pages) among the more than 80 autoimmune diseases I cover. As such, I really can’t recommend the book to my “now, fellow PMR suffers.” But if you are not entirely familiar with the science of immunology and its many paradoxes, you may find the text worthwhile. And please understand that this is not a book promotion because I have absolutely no interest in profiting from this book. My goal in writing it (and even more so now as an immunology [PMR] patient) is strictly to present the science of immunology to laypersons and health professionals with limited or no understanding of current immunology, its remarkable progress, and enormous relevance in healthcare.

To wit, I decided (again, prior to my PMR diagnosis) to create a free online website (www.immuneparadox.com) that parallels the content of the book including 90 blog posts with a “Science Version” (45 posts) for health professionals and a “Layperson Version” (45 posts) with the book content in simpler explanations and less technical jargon. But of course, as Einstein said so brilliantly, “Everything should be made as simple as possible, but not simpler.” I’ll also be adding podcasts and along with some preeminent immunologists from Bethesda, Rockville, and Frederick, MD we will be starting interactive monthly online immunology discussion groups for those interested. Please consider registering as soon as we have the links available. And please remember, everything is free. In the meantime, with the help of my physician and hopefully, a better understanding of PMR, and indeed of all autoimmune diseases, I’ll be attending to my condition and thinking of all my fellow sufferers.

@bfh3 thanks for replying directly - was it your PCP who increased to 30mg - or did you ask ? So you and i and many many other split the dose , mornings are not pain free otherwise ; And our experiences that 2-3 days after ( not even really " strenuous" ?) activity created a situation of prolonged morning pain - I have seen others comment on this as well.
In this figure from Lundberg et al 2022 Update on Polymyalgia Rheumatica, I am looking to figure out what are the current theories about 'Damage or Pathogen-associated Molecular Patterns'

Today i will decrease from 30mg ( 3 X 10mg) to 27.5 mg . My strategy will be to lower afternoon dose. I will keep going to aqau-PT and aqua ZUmba and try to take a bike ride around the neighborhood !!