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

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.

John, @johnbishop, thank you for serving as a mentor to polymyalgia Rheumatica group (PMR). I will speak with my doctor about splitting my prednisone dosage to 10mg in am, and 5mg in pm. as a means to lessen the nighttime and/or early morning symptoms.
I also have SFPN (small fiber peripheral neuropathy) ,idiopathic in origin. My rosacea is also flaring every couple weeks this past month or so.
How many of the PMR group also have co-existing auto-immune type conditions? John, are you able to broadcast this question?
Thank You. curious @phoenix0509 ,David W.

Virginia J ; Nice of you to reply. PMR is constellation of symptoms that are baffling at times. I am curious when your 3 episodes of PMR occurred in the calendar year. I noticed the 3rd episode occurred this past December 2019. Do you recall in what month episode 1 and 2 started , or was diagnosed? Thanks David W.

Hi,

I was just recently diagnosed with PMR. I am currently on 15mg of prednisone down from 20mg.
Most of my pain is in my legs and hips. I am excited that I found a group that I can talk to and gain knowledge from.

My first bout started in September, diagnosed in late October. When symptoms started, I didn’t know what was wrong, tried stretching, different exercise until I finally went to physician. I had a really high sed rate, classic symptoms, was diagnosed by my primary care physician and saw rheumatologist the same day. The second time 12 years later, symptoms started in November, diagnosed in February. That time I had symptoms, but CRP was only high normal. This time symptoms started in November, diagnosed in December. I have had the same primary care physician for all 3 and we have an excellent relationship. She wants me to see a rheumatologist again and I will see one at the end of January, but not sure if I will learn anything new. I pretty much have been free to titrate my dose down, just sending her a message every 2 weeks as to where I am and when I need more prednisone. I also have neutropenia and have had that since my first bout 15 years ago. I saw a hematologist at the time, it has been unchanged for 15 years, so now my primary just tests it every 6 months. It causes no problems.

@virginiaj thank you for explaining what time of year your 3 bouts of PMR occurred , I find it interesting that all 3 bouts of PMR started in the fall of the year. September,November and November. Also interesting is that my first case of PMR became acute in December 2019. Diagnosed finally after clinical symptoms and high CRP (29). I did have a Flu vaccine and Prevnar Vaccine together in October (2019).
@virginiaj- did you get the flu vaccine or any vaccine each fall prior to the start of each occurrence of PMR?

Thanks, David

Hi, Welcome. PMR is a strange disease. I had my first bout 15 years ago, then was fine for 12 years. I had a recurrence 2 years ago, then a 3rd recurrence starting this December. The first time I was on prednisone 2 years, the 2nd time 10 months. I do wonder if I came off the prednisone too fast the second time and if this 3rd bout is because of that. I do take my prednisone at about 8:00 at night because it helps me sleep without the stiffness at night and, as a morning person, I am more active then. I do get symptomatic starting about 6 at night and into the evening. I have seen people split there dose and wonder about trying that. As far as the stiffness, I found a great description in the Mayo education piece. It described a “gelling” phenomenon, where your muscles get stiff when sitting, standing or laying, then loosen up as you move. I definitely notice that. My first rheumatologist recommended doing lots of range of motion exercise, but not weights. I have stayed with that advice. I try to read everything I can find, but have never found a cause or way to prevent recurrence. I am now 72 (almost 73). My CRP this time was 20 (normal 8-20).
Best wishes.

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.