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

After 9 months of watching my mobility slowing suffer to the point of not being able to do everyday activities. I finally was diagnosed in Feb with PMR and started with 15 mg of prednisone. I was never was able to get on a lower dose and still had pain. In April I was diagnosed with GCA 50 mg of prednisone a day. I understand that we need to be patient with these diseases. We are fortunate that there is treatment and recovery in our future. This group has been so good for me to read each morning and feel like I'm not alone. I am beginning to have some side effects from the large daily dose of prednisone. The worst side effect is now I have shingles. I have terrible pain on the upper side of my back and a few bumps. I had the vaccine so I probably have a mild case because of that, but I was scheduled to start my shots of Actemra today and start lowering the medication dose. The doctor has put that on hold. Has anyone had a similar experience?

Mayo

I am a 72 year old woman of Scandinavia/English descent. I began experiencing pain a week after my first Moderna vaccine early February 2021. After months of doctor visits, blood tests, panel work, I was finally diagnosed with PMR in December of that year. I was prescribed prednisone beginning with 40mg and tapered down pretty quickly to 0mg ten months later. Pain returned the last 4-6 weeks while I was taking 2-3mg a day.

I don’t like prednisone side effects (loved the no pain!) so my goal is to use lifestyle changes and deal with the PMR as long as I can.

I begin every day with 20 minutes of breathing exercises (Wim Hof method), 20 minutes of yoga (Sun salutations) and a 2 minute cold shower (another Wim Hof recommendation). I take 2000mg of curcumin and recently began an anti inflammatory diet.

I am dealing with the pain and weakness but I cannot hike the mountains like I used to. I’m still active- always moving, walking, bike riding (e-bike now), smaller hikes and gardening.

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.

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.

hi everyone i have been on predisolne for 18months now i came off them at christmas and thought i was done but 2 weeks later i had to go back on them i am now down to 4 mgm should be off them by end of august over the 18 months i have had really bad insomnia feeling so tired i was glad at the start when i was given the steroids at the start because it took the pain away but wow what a journey i have been on oh also the dark moods they were something else

My symptoms remained stable generally for the 2-3 days after lowering my dosage from 20 to 15. The main thing I noticed during this time was that I was noticeably light-headed much of the day. What was odd was that, while I felt like I wanted to take a nap all day, I felt probably a little more alert somehow. I felt wiped out but my focus somehow seemed slightly better.

This weekend generally went well. My symptoms seemed subtly milder in days 2-3 after my yardwork on Thursday, and I did more casual yardwork with my wife yesterday.

Unfortunately, I had a lot of trouble getting out of bed this morning, and struggled to get out of a chair on my first try, and had to work from home today. I was in slippers all day until about an hour ago, when I felt flexible enough to try putting on real shoes.

As usual, I've gradually felt better as the day has progressed but still not where I was this past weekend. I'm not sure what to make of it. I generally feel about the same as I did this time last week, but have definitely gone backwards from 2-3 days ago.

At this point, I'd be terrified of being off prednisone. I trust in my doctor, but I'm wondering if it's possible that my initial dose was not strong enough. I'm supposed to go from 15 to 10 for 4-5 weeks after next Tuesday. Hopefully, the extended treatment kills off the symptoms slowly, and I just need to be patient.

I'm kinda slow and skeptical and my memory not that great either about the genesis of my ailment. First of all it took quite a lot of testing before I was diagnosed and then with something I'd never heard of (after Covid another recent sickness sprung on us out of the blue) I felt it was just a catchall for a myriad of complaints. Bloodwork was the clincher apparently too many white blood cells and inflammation. Wallah! PMR! But I always hear of joints being affected which I do not experience but painful muscles I certainly had before prednisone. But what I suffer most from is tight muscles in my limbs. They've shrunken from when I was totally laid up but now they are as hard as rocks and woefully impede my flexibility and this is my major beef and nobody else seems to have this problem. It must be an auto-immune disease symptom because like any other sickness one usually starts feeling a little progress but with this it has not given an inch. The doctors are puzzled.

I have been on prednisone about 2 weeks now, with the first week on 20 mg and this past week (and next week) on 15 mg, and a few weeks after with 10 mg. My limited experience has been some improvements during the week and "backwards steps" on or around the last 2 weekends. I'm still learning, and am hoping for symptoms to disappear, but have overall just seen a bumpy road the last 2 weeks, still far from symptom-free.

I'm sorry to read this. I hope that your doctor can get you on the right treatment soon.

I hope that your rheumatologist visit gets you on the right track. I was very lucky to get into my initial rheumatologist appointment within about 2 weeks of the flagged blood tests, and my doctor listened to me for about an hour. I don't know if the current treatment will work, but I think it helped me to prepare for the appointment by writing down my "symptom timeline" before the appointment, so that I could tell him everything I saw. Luckily my doctor took the time to listen to everything I had to say. I'm similar age (52) and prior to this had not ever had notable health issues of any kind, so this has turned my life upside down, although I know it could be much worse.