Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?
I was diagnosed with PMR 2 1/2 years ago. Steroids didn’t help now I’m on Methotrexate for a month. My EMG today was negative. I take Tramodsl, Motrin, and Tylenol to deal w the extreme pain. What do I do next? I’m 54 now.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.
Hi @billjan, I'm glad your PMR seems to be under control. Have you talked to your doctor about the tumid lupus spots returning?
I did find an interesting article that may provide some more information.
Tumid lupus erythematosus: An intriguing dermatopathological connotation treated successfully with topical tacrolimus and hydroxyxhloroquine combination
— http://www.e-ijd.org/article.asp?issn=0019-5154;year=2014;volume=59;issue=2;spage=210;epage=210;aulast=Verma
John
I find your post interesting. I am 63 and have been having symptoms that seem to mirror others who have been diagnosed with pmr. I currently have no diagnosis. I have had blood tests with elevated CRP and ESR. I do not have RA according to blood test results. I had a series of X-rays that indicate some degeneration in neck and shoulder areas. My symptoms appeared shortly after getting the flu shot. I have been trying to research what I do next to figure this thing out. I am currently on my 3rd round of prednisone for 20 days starting with 40 mg and decreasing by 10 mg every 5 days. My provider has not scheduled any follow up blood work or appointment and seems to be satisfied with a diagnosis of musculoskeletal pain. I don’t think he quite understands the pain and symptoms.
I have trouble getting more than 2 to 3 hours of sleep at a time. I get out of bed around 4 or 5. It is difficult to get out of bed and walk down the steps. My mobility improves as the morning goes on and around 10:00, I’m usually feeling better. I usually cannot move my arms much with limited ROM especially left side. Even when the major pain and stiffness decreases, I still hurt even at rest. Pain is mainly shoulders and hip/buttock area, heel pain, numbness in both arms and sometimes feet, feeling of being warm like a hot flash.
Seeing a rheumatologist in my area has at least a 6 to 8 month waiting time. I have an appointment with a new provider in 3 weeks so any advice on questions I should ask or additional tests would be appreciated. Thanks in advance.
Hi Carley,
I am truly sorry to hear about your pain…. My diagnosis was basically the result of ruling everything else out and the 20 mg dose of Prednisone that relieved the pain and symptoms of PMR.
I had blood tests for everything the rheumatologist could think of. I remember some of the tests were so obscure that the phlebotomist did not know how to draw the blood for the tests and had to look up the proper way.
All tests came back negative accept the CRP and ESR which were elevated, but not so elevated that it ruled out Giant cell arteritis. I had a cat scan to see if there was something wrong internally… negative. Negative on lyme disease, RA, cancer, infection, lupus, sjogren's, MS, thyroid, and many other autoimmune diseases.
After so many years I can accurately detect the pain of my PMR. It’s not in the muscle, not in the joints, or the bones. It’s inflammation in the connective tissue. Ligaments and tendons. Especially where they connect to the bone. My muscles are strong, not affected at all. But the pain in the connective tissue is so intense that I cannot use my muscles and I have limited ROM. I also feel it in the connective tissue in my rib cage. Every breath I take and with the expansion of my ribs I can feel the pain. The tendons in my neck were so inflamed that I could barely turn my head to the side. I can feel the warmth of the PMR inflammation on my skin. It also felt like the flu because it’s systemic and the pain is very exhausting. I did have a elevated temp as well. And would often wake with night sweats.
As for advice on questions to ask you new provider… I’m not sure. I’m not a doctor, but the dosage of your prednisone seems high and too short of a duration to treat PMR. It’s been the case for me to start at 20 or 15 mg and reduce by 1 mg every two or three weeks until I get to 10, then reduce 1 mg every month monitoring the pain. If I flare up I go back up 1 mg for the month and start the taper again. It’s a long process to taper and get off the meds, but it can be done.
I hope your new doctor can provide you with answers and that your pain subsides. Keep us posted on your progress.
Thanks for your reply. I think the doseage of prednisone was because the doctor I saw really doesn’t know what I am experiencing and is just calling it musculoskeletal pain. I am keeping a daily flow sheet of pain, ROM for upper extremities. Etc so I have some data to take with me. I am hoping I can get some better imaging like cat scan or mri to help rule out other issues. I will just have to wait it out. At least I am finding some good info and forums to follow for advice from people who have been through this before. My next appointment is in 3 weeks. Earliest I could get.
Fingers crossed you find answers and your new doctor listens. It is so exhausting to have to quantify ones pain and to explain over and over again to every doctor where the pain is located and how it affects your daily life. Your spreadsheet is genius!
I was fascinated with your post. I am 73 and was diagnosed with PMR in 1999. I was put on Prednisone and, after a period of tapering, ended up with a daily dosage of 20 mgs. I remember vividly my Doctor saying that I would be on Prednisone the rest of my life. He also said that if I ever had a blinding headache, take as many Prednisone pills that I could hold in my hand and go straight to Emergency. This was alarming but also encouraging because it implied to me that Prednisone must be a relatively safe drug. From 1999 until 2017 I had been feeling fine, actually better than fine. In October 2017, my current doctor asked if I wanted a Flu Shot. I routinely have had Flu Shots and I said Sure! Within 3 days my left shoulder hurt. The kind of hurt where one can not get comfortable in bed. Three days later, that pain was gone and was replaced by a similar pain in my left hip. Three days later, that pain was gone and there was something wrong with my feet and calves. Both feet were slightly puffy and felt numb-ish. Both calves were very painful. And that is the same today… over a year later. My Doctor had ordered many blood tests, a chest Xray and an EKG. Everything appeared normal. He arranged appointments with a Physical Therapist/Pain Management Doctor and an Endocrinologist. The PT Doctor said that I was, in fact, very healthy. She also said that she didn't know what happened to my feet but that they would never get worse and that I would never need a cane or wheelchair. The Endocrinologist said that I likely had "Reactive Arthritis" and that, for my size, I was taking too much Prednisone for too long. He started a tapering program (roughly last summer) and in early Feb. 2019, I was completely off Prednisone. Since my legs continued to hurt and the pain had spread somewhat to my thighs, I could not identify any withdrawal symptoms. However now, 3 weeks after being off Prednisone, I feel those dreaded PMR symptoms coming back with a vengeance. I will be seeing my regular Doctor soon. What I appreciated about your post was the connection to the Flu Shot. I was convinced that my pain was triggered by the Flu Shot but almost everybody I mentioned it to scoffed at the notion. I feel vindicated, Itta! (Though still in pain!) I don't know what happened to my feet. I don't know what happened to my calves but I suspect poor circulation since I have noticed pitting edema around the ankles. I will be asking my Doctor if I should have an ultrasound of my legs and, of course, will return to some level of Prednisone help.
Anyway, I want to thank you for your post. This Forum has been a huge comfort for me.
I was diagnosed with disease last December. First few doses of 20mg of prednisone like a miracle. Now I have tapered to 6mg a day and plan to go to 5 to-morrow, March 1st, and see how I do. I believe diet extremely important. To begin with no processed foods, now/very low sugar, lots of fresh veg and fruits. Also anti-inflammatory spices and herbs. You can find list on internet. John Bishop is good mentor/advisor.
Hello @carina, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with PMR. It really is great when members with similar symptoms can share their experience and let us know we are not alone. I also have PMR but it's currently in remission. My first occurrence was in 2007 and lasted 3 years at which time I was able to taper off of prednisone. The second occurrence was in 2016 and lasted a year and half before I could taper off of prednisone. I'm not sure what it is about the disease but while it's similar for a lot of us, each of us seem to be affected a little differently. I also have edema in my lower legs and have seen some pitting. I'm 75 now and also have lymphedema which I have to wear compression socks to help with the swelling.
Have you seen a rheumatologist? Thanks again for joining the discussion.
John
Thanks for the nice Welcome to MCC, John. Sharing experiences improves our health as much as drugs sometimes.
I bought a pair of compression socks just last weekend but got so dazzled and distracted by the range of cool designs that I ended up buying a size too small. I will be getting a larger pair in a few days. As for the Rheumatologist, I haven't yet but will be asking my Dr for a referral the next time I see him, hopefully next week. In my neck of the woods, such an appointment will take 8 months or so.
Thanks again for your interest and support.
Thanks for your response/suggestions, noosat1. I know exactly how incredible it feels to have Prednisone work so well in literally 2 or 3 days. I should have tried to taper down like you are doing; I wish you well. I'm trying to adjust my diet. Everything I like seems to be on the AVOID list. 🙁
I know, however, if you have the will power to resist, it becomes so much easier that after a while you don't even want it. Whatever it is.
If Pred did not help, I think the PMR diagnosis needs to be re-examined.