I’m just wondering how old most of you are with PMR

Posted by alexander7757 @alexander7757, Apr 25 9:35pm

I am 59, but started having PMR symptoms for about 4 years. I still do not have an official diagnosis, but it just started one day when I woke up. It’s so bad for me that I can’t get out of a chair, dress myself . I’m too old to get disability. The symptoms just stop one day and it seems that it’s more of a winter thing for me. I seem like I’m in remission when I started working days, after a decade of working nights. Recently we’ve had a few storms come through and I am in a flare again. I took my first dose of Kevzara today.
Anyone here get PMR at my age. The doctors here think I’m too young for PMR?
I’m so confused and worried about my future. I either have very severe suffering or I have to take 10 mg of Prednisone every twelve hours and nothing different will help me?
I am desperate and looking for answers

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thereselefever | @thereselefever | May 1 7:36am

I am 61 and was diagnosed 2 years ago.

sticksandbugs | @sticksandbugs | May 1 8:17am

I'm 59 and was diagnosed October 2024. I developed intense shoulder and hip pain in September, tried to tough it out because I assumed I strained my muscles from too much activity, although I hadn't actually done anything different from my usual activities. It hit hard and fast and unfortunately I did not respond well to steroids until I reached 40 mg daily. I stayed on that for a few months, and also started methotrexate in December because my CRP was still really high (60). I have been weaning down from 40 mg starting end of March 2025 when my CRP was finally down to normal. It's going well, I feel ok, except now my CRP is rising again. So, we'll see. I hope you find a good medication regimen and feel better soon.

jfannarbor | @jfannarbor | May 1 2:48pm

I was diagnosed with PMR about 40 years ago and have been on and off prednisone for nearly 40 years, mostly on. I am currently on Kevzara for about 7 months and am down to 2.5 mg of prednisone per day and I think Kevzara is working, but I am also taking 1000 mg Tylenol 3 X/ day. You can read about my history using my name unique name of either jfannarbor or jchamilt2002.

tweetypie13 | @tweetypie13 | 5 days ago

Been on Kevzara 5 weeks, SED and CRP are all normal. First time since my initial diagnosis a year ago. At 7 mg Pred. My rheumatologist told me to “STOP, all now and use Tylenol for arthritis for discomfort, come back in 6 months”. I don’t know anyone who’s gone cold turkey, and not tapered. I plan to taper. Anyone go cold turkey?

chpfireball | @chpfireball | 5 days ago

In reply to @kpoesch "I'm 75 and was recently diagnosed." + (show)

I was diagnosed the first time at age 59 and again at 61. I was put on 15mg prednisone to start and reduced down to zero. Two months later both hands swelled up really bad. I had no strength in my hands and could barely bend my fingers. I am back on prednisone again at 10mg and it is working so far.

rllh5403 | @rllh5403 | 4 days ago

In reply to @dadcue "Are you still taking prednisone?" + (show)

rllh5403 | @rllh5403 | 4 days ago

No. I haven't taken prednisone in about a year.

megz | @megz | 4 days ago

In reply to @tweetypie13 "Been on Kevzara 5 weeks, SED and CRP are all normal. First time since my initial..." + (show)

Sounds like you would be taking a big risk going cold turkey from 7mg prednisone to none, with or without Kevzara. How much experience does your rheumatologist have with adrenal function and prednisone? For such an experiment, potentially at the expense of your health, why is it that the rheumatologist doesn't want to see you for 6mths? Alarm bells for me.