Questioning my diagnosis of PMR

Similar to my first bout with PMR, mostly legs, some arms. I couldn’t get down on the floor and if I did, I couldn’t get up. No pain, just no strength in legs. I was put on 30 mg of prednisone and back to normal in 3 days. I slowly tapered over a year to 5ml.for another month. Sounds like you might have PMR but didn’t take a high enough dose at the front end and needed to stay on it for longer. Hope you get your issues resolved.

Thank you pickle7. Yes, I have the same experience with getting on the floor. I have to have a piece of furniture to help me get down or up. When I lost the ability to use my legs at all last year, I started with 40 mg so it has been more than a year with trying to taper. Right now I'm just very frustrated. I really appreciate your response.

I am 72, have had PMR for over a year now, on prednisone for almost a year, and I have had symptoms in my legs for most of that time, though also upper body, shoulder and hip symptoms off and on. I initially went to my internist with a main complaint of leg weakness and pain. Since I have a long history of lumbar spine problems she sent me for an MRI. I essentially have no discs at four spine levels so she sent me for a lumbar cortisone injection (which I never received). I told her I thought something else was going on but she did not believe me. Then I got worse. I was running a fever, I felt sick but did not have Covid, couldn't raise my arms and in the morning I felt like my legs wouldn't hold me when I got up. Finally I got to a rheumatologist and was put on 20 mg prednisone which took all my symptoms away. I'm presently on 10 mg after twice failing the taper to levels lower than that. Most of the symptoms I have now are in my legs. I get pain sometimes in the front of my thighs, sometimes the back and sometimes in the calves. In the morning I'm very stiff and my shoulders and sometimes neck hurt. About 2 hours after I take the prednisone I am much better. I have a lot of fatigue. Symptoms in the legs are not the "classic" PMR symptoms so I have, at times, like you, questioned the diagnosis. However, the combination of everything I've experienced confirms in my mind that I do have the disease. You did not mention lab results, but my ESR was high (35) but not really high and my CRP was normal.

Thank you Linda7. The problems you describe in your legs are very familiar. While I don't have the other issues you have, I wonder if I should just bump myself back up to 10mg. My labs are all falling in the normal range. Thank you for sharing your experience with me.

I don't know what dose of prednisone you started on or whether you had good relief at 10 mg before. What I do know is that trying to endure symptoms with this disease in hopes that it will get better did not work for me. Also, continuing to taper as the doctor directed when I didn't feel good at my present dose did not work. I'm originally from New England, a long line of tough people, but that way of dealing with things doesn't seem to be effective with this disease. My last flare-up at 7 mg involved stabbing pains under my shoulder blades and similar sudden pains that were impossible to live with, along with more fatigue. I bumped myself up to 8 mg and called the doctor. He bumped me to 10 and that felt like a failure and I didn't want to go that high but now I see that I needed to. I'm going to be much more cautious on the taper next time. I think you need to talk to your doctor and request a trial of a higher dose. Your feeling about what you need is probably right.

What an encouraging and supportive response! I do believe that the body does tell us what it needs. I sent an email to doc. Thanks so much!

Barb, you are not alone in questioning your diagnosis. Autoimmune disease are hard to nail down. Here are a couple of similar discussions that you might also find interesting:
- Do I really have PMR?: https://connect.mayoclinic.org/discussion/so-i-really-have-pmr/
- PMR initial diagnosis: Can there be an underlying disease?: https://connect.mayoclinic.org/discussion/pmr-initial-diagnosis-1/

First, know that you are in good company. I, too experienced a sudden onset of leg weeakness and pain below the waist that one of many drs I went to suspected was PMR because all the Rheumy's blood tests were negative for everything else. So I did aquatherapy for several months to strengthen my muscles. It helped me a great deal. And I continued the anti-inflammatory diet I had already been on before this started which helped me lose 60 pounds. I credit the weight loss, water therapy and prayer as the most helpful. Prednosone was offered but I chose not to take it for personal reasons. So I've had no meds for this. After about six months or more, all my symptoms including leg weakness gradually went away! I know each person is different, but I want you to know there is hope for you. Before my situation changed I was in 24/7 pain, especially in both knees. I could not bend down to tie my shoes, get in the tub, walk very well, lift my leg and today, right now, I am doing all of those things. So don't lose hope. I don't know what the future holds as I continue to age but I am thankful to be feeling better right now. I am 74 years old this month.

I too only have problems from my waist down. I have chosen not to take steroids and have spent the last three years trying to identify other causes for several of my symptoms. I found an orthopedic doctor who diagnosed with bi-lateral Ischiofemoral impingement and taught me to keep my feet a hips width apart at all times. This takes practice since ladies are taught from birth to keep your feet together. I call it "walk, sit, sleep like a man". This reduced my hip and leg pain significantly within a few days - I mean like 50-60%. It has also given me back range of motion and strength. I believe the inflammation in the body from PMR caused this problem to flare and present with pain. Every other doctor never considered anything except PMR. To this day I think of that orthopedic doctor as a miracle in my life. The right doctor at the right time. He also has me using a cane but that is a small price to pay to be mobile. Let us know if this helps you as well.

I was tapering off Prednisone starting from 15 mg I went to 12.5-then 10-then 8,6,4, 3,2.5,2,1.5,1,1/2. I think it is very important to taper in one half Mg doses when you get to the end of tapering every month.