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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
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.
Replies to "I'm a 52 year old male, and just got diagnosed with PMR about 10 days ago,..."
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 .
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Did your symptoms get worse when you decreased from 20 mg to 15 mg?
My rheumatologist wanted me to be on a "stable dose" of prednisone and not make too many changes. It wasn't so much about day to day changes in my symptoms but my overall symptoms from one week to the next.
My rheumatologist preferred that I didn't make any dose change for at least a month most of the time. Whenever you change your dose you need to give it a chance to work. Your body needs time to adjust to the new dose. You will likely feel your symptoms get worse while your body is trying to adjust to a lower dose. I have to admit the instant gratification of a higher dose is hard to resist.
A rapid change is symptoms while on a stable dose of prednisone is referred to as a "flare." This is when your symptoms are noticeably worse several days in a row. Ideally you would report that to your doctor before increasing your dose.
Your rheumatologist might want you to stop prednisone altogether just to see what symptoms you have when you aren't taking prednisone. Stopping prednisone with active PMR can be a painful experience. It is probably necessary for an accurate evaluation of your symptoms which might provide a more accurate diagnosis.
I haven't had any problems with my Moderna vaccine and boosters. I do tend to have problems with flu vaccines and vaccines in general. I'm not an anti-vax person but I avoid all vaccines as much as possible. I don't like it when something revs up my immune system ... it usually is too "revved up" and "overactive" and needs to be regulated better. I need something to calm my immune system down. Generally speaking, I'm a calm person and I like to chill out as much as I can.