Connect
← Return to Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Discussion
Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
Ethan, Thank You for starting this PMR group. I also found @johnbishop experiences with PMR very helpful. I am new to PMR diagnosis. now on day 10 or so of prednisone. I have seen a 40-50 % reduction in symptoms at 10mg/day dosage, MD advised to increase to 15mg/day. I had a recent spinal fusion (8 weeks ago) ,so at low end of prednisone dosing . I have found PMR to be the great imitator of many ailments. My CRP went to 29, ESR unavailable , several weeks prior to diagnosis, however my symptoms of shoulder pain, arm pain, muscle pain,low back pain all had occurred months to 2 years prior to diagnosis. I had chest pain/thoracic pain that sent me to the ER and Urgent Care. Doctor after Doctor tried there best to come up with a diagnosis. PMR is a great imitator of so many other more common illnesses. I am still puzzled why the symptoms occur worse at night/early morning or in recumbent position. I have read many of the experiences here at Mayo Connect on Polymyalgia Rheumatica. Thank You all for educating me .
Replies to "Ethan, Thank You for starting this PMR group. I also found @johnbishop experiences with PMR very..."
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.
Connect
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.