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

I have had PMR for 2 yrs. Am on Infusions with Actemra. It helps.
I have muscle aches in thighs.
Are there others that have same problem. ? Trina

Thanks for starting a PMR Group Ethan @ethanmcconkey! I hope other members with PMR will share their experience and share any tips they have.

I've had 2 occurrences of PMR. The first time it took me a little over 3 years to taper off of prednisone. The second occurence 6 years later, it took me 1-1/2 years to taper off of prednisone. I lived with a minor amount of aches and pains at each taper point but kept going unless the pain was really bad. It might help to keep a tapering off log and write down the dosage and the pain level so that you have something to compare with each time you drop the dosage. I started tapering by 1/2 mg when it got difficult and that seemed to help me.

@trina24
Hi, Trina. I just got diagnosed with PMR this summer, after months and months of intense THIGH muscle pain in both thighs (the tops/fronts). First reaction was blame it on the statin. DQ'd the statin; no change. I was constantly massaging the tops of my thighs during the day; pain increased significantly during the night; also sometimes experience stabbing pains on lower thigh area (above knees). PA suspected PMR as joints weren't involved (but I've had trochanter bursitis for several years); CRP and Sed Rates were normal but antigen results were not. Am on prednisone trying to wean down to 2.5 every day. Thank you for mentioning the thigh pain as no one else seems to pinpoint that as their area of pain. It was a relief to get a diagnosis; it fit, made sense, and the prednisone works. I find staying active/moving around helps so much especially just after getting up in the mornings; but cannot push it like all day long or I pay for it the next day....

@johnbishop Im 73, and have severe nerve damage in my legs.Oive been on prednisone for 9 years low dose until it came back with a bengence.I cant lift my arms,my hands go numb.I went to thevER twice.They gave me 40 mil of prednisone to start then tapered off. Second time through m6 IV Hydrocortisone. ER.doc said If I feel better in the morning,its adrenal insufficiency. NOw Im seeing a endocrinologist gor th3 first time.I just wish they can figure ou5 the nerve damage.