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

@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.

I am on Actemra. Infusion
Once a month & that helps
But was having thigh achness.Rheumatologist said labs were good not PMR had X-ray. I have spinal stenosis. Getting PT

Hello @gerrir123, Welcome to Connect. It sounds like you have neuropathy symptoms along with your PMR symptoms. You also mentioned being treated for RA for 9 years before being diagnosed with PMR if I read your other post in another discussion correctly. Have you seen a neurologist or been tested for nerve damage in your legs?

@jfannarbor Thank you so much for writing that the low dose prednisone works for osteoarthritis (oa). I seem to have a particularly severe oa and will find out if my physician will try me on that!!

@kjoed53 Talk about fuzzy... I had the date wrong for the rheumatologist... it was today!
The cardiologist now is happy with my blood pressure (he had me reduce the enalapril from 20 mg to 5 mg). I took a list of printed questions to the rheumatologist today so I wouldn't forget to ask, and my wife accompanied me to write down the answers. He bumped my prednisone back up to 2.5 mg daily, which should help with the mood swings and the other yucky sensations I've been dealing with, and maybe by next week the body aches will be gone. (Sooner, I hope!) The only point of contention was he disagreed that I needed to know an "emergency dose," should I be in a wreck or other physical trauma. I'd read that that can push someone into a cortisol crisis, but he disagreed. He said it would be up to the folks in the ER to determine what I needed. While I hope he's right, I *really* hope I never find myself in that situation!

@rugi53
I hope you never face that situation too, but I can see his point. It should be up to the ER physician to determine any course of action/treatment based on the circumstances that brought you to the ER. If you want your rheumatologist involved in case of an emergency, maybe you can carry his card in your wallet with your diagnosis and Rx dosage written on it.

Hi, I began prednisone in February thos year at 10mg. When I was on it before in 2022, I started at 15mg. When I went to taper, I didn't run into any problems.
Two weeks ago, I went down from 10 to 9mg. In that two weeks, I've felt worse and worse. My mood is irritable, I am weepy at times and find no joy at all.
Does this mean I shouldn't taper yet? I will call my doctor but wonder if there's something I can take to make this taper easier.
Xanax, valium... lithium (joking sorta).

@kjoed53 Thank you. I did just that this afternoon.

I’m so glad to find this connection! I’m new to this horrible crazy disease and struggling with the information. I started having shoulder and hip pain right after my 66 birthday. I’m a very active person so waking up like I had been strapped in a straight jacket and could not get dressed or off the toilet by myself was incredibly humbling. By afternoon could move but still a lot of pain. Attributing it to going tubing with the grandkids……. I went on for a month with incredible pain and stiffness. Finally went to dr and said there is definitely something wrong with me. Dr sent me to physical therapy. Which was not help. Because I could not do things in am…. But afternoon I could move again. So frustrating and again the shoulder and hip pain…. And other visit to dr. But this time I had started my own research. I knew what I had and asked for referral to rheumatologist.! I really think when you look super healthy on the outside…. The GP who know you as a super health active senior does not always listen. So I’m telling people. Advocate for yourself….complain, even when you don’t want to admit your pain. They need to listen better…. I was very lucky to get in to a rheumatologist after 2 weeks. Oct 15th. She heard me loud and clear! My blood markers were right on for PMR.
not the diagnosis I wanted. It scares me for sure! But after starting 20 mg daily of prednisone. I feel so much better. But the fear of tapering and pain coming back is scary to me. I’m staying positive…. But really the thought is always in the back of my mind. Anxious to see rheumatologist again middle of November. I cannot believe how quickly this has changed my life. I’m thankful for this discussion group! And all the helpful information.