Possible PMR diagnosis - but legs only

Posted by amroo @amroo, Mar 2 5:29pm

I've had mild to severe aching and stiffness in my legs, particularly hip area and lower legs/ankles/feet, for 4 months. ESR and CRP were negative. I just saw a rheumatologist who thinks it's most likely PMR. He's re-ordering labs.

Some of the symptoms are classic, others not at all. It's 100% from the hips down, on both sides, none at all in the upper body, which is not typical PMR. I used to have pretty bad "growing pains" in my legs as a child, it feels just like that, an intense, deep muscular ache. Unfortunately I have a horrible reaction to oral steroids / prednisone, so that's not a possibility for me.

Any other thoughts of what might be causing this? Any suggestions on other treatment since I can't use steroids?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I'm not sure about your problem being PMR. PMR involves inflammation of the lining and other tissue around joints. It isn't inflammation of muscles. But you would have to figure that out with your doctor.

When I had PMR I had a lot of stiffness. As far as my hips and legs, it was hard to bend and pick up something off of the floor, put on socks and shoes, get up from a chair, etc. I also had a lot of stiffness and pain in my shoulders and neck.

As far as treatments other than prednisone, there are methotrexate and Kevzara. I think Kevzara has fewer side effects, but methotrexate works for some people. Both of those drugs can take up to 3 months to take full effect.

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Hello @amroo, I would like to add my welcome to Connect along with @jeff97 and others. My experience is similar to @jeff87 with the pain and stiffness and prednisone fortunately for me made it go away pretty quickly after taking it. There are several other conditions that can mimic PMR which I'm guessing is why your rheumatologist is ordering more labs.

- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Is your rheumatologist re-ordering the ESR and CRP labs?

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I'm being treated for PMR. Like you, I did not experience pain and stiffness in the neck and shoulders, but my CRP was 67. "Growing pains" is actually a term that I used to describe what I was feeling in the creases between my hips and thighs where it hurt down deep. The pain would shoot down my inner thighs to the back of my knees. Eventually I started waking up so stiff that I felt like I had cement columns for legs. It took me hours to loosen up. (That part came on somewhat suddenly after weeks of fatigue.) I had profuse body aches and just felt sick. I tested for COVID. Negative.
May I also add that while I'm 73, I'm still pretty limber but jeff97's symptoms in the hips/legs mirror mine.
"As far as my hips and legs, it was hard to bend and pick up something off of the floor, put on socks and shoes, get up from a chair, etc." Getting down & up from the toilet, as well as in & out of the car was awkward too. It was thought that because I responded so well to the Medrol dose pack, it was most likely PMR vs anything else it may have been in my case.

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Profile picture for John, Volunteer Mentor @johnbishop

Hello @amroo, I would like to add my welcome to Connect along with @jeff97 and others. My experience is similar to @jeff87 with the pain and stiffness and prednisone fortunately for me made it go away pretty quickly after taking it. There are several other conditions that can mimic PMR which I'm guessing is why your rheumatologist is ordering more labs.

- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Is your rheumatologist re-ordering the ESR and CRP labs?

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@johnbishop Yes, my rheumatologist has already re-ordered a lot of labs, since the first set was by my family doctor 3 months ago and he wants to compare. I think he's saying it's probably PMR because after a thorough medical history and looking at all labs (not just inflammatory/rheumatoid tests) there are no red flags for anything else at all.

I teach yoga, TRX, and other fitness classes, so I'm flexible (but not hyperflexible), strong, healthy otherwise. Even though I have full range of all joints, they feel sooooo stiff, like Lurch or the Tin Man. I think right now the only thing keeping me mobile is my daily yoga practice and teaching yoga, which at least keeps me moving.

Thank you for the link to the article about other things that can mimic PMR.

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Profile picture for pah17 @pah17

I'm being treated for PMR. Like you, I did not experience pain and stiffness in the neck and shoulders, but my CRP was 67. "Growing pains" is actually a term that I used to describe what I was feeling in the creases between my hips and thighs where it hurt down deep. The pain would shoot down my inner thighs to the back of my knees. Eventually I started waking up so stiff that I felt like I had cement columns for legs. It took me hours to loosen up. (That part came on somewhat suddenly after weeks of fatigue.) I had profuse body aches and just felt sick. I tested for COVID. Negative.
May I also add that while I'm 73, I'm still pretty limber but jeff97's symptoms in the hips/legs mirror mine.
"As far as my hips and legs, it was hard to bend and pick up something off of the floor, put on socks and shoes, get up from a chair, etc." Getting down & up from the toilet, as well as in & out of the car was awkward too. It was thought that because I responded so well to the Medrol dose pack, it was most likely PMR vs anything else it may have been in my case.

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@pah17 - "growing pains" are the best way for me to describe the intensely deep muscle aching, like it's all the way down to the bone. Kind of like trying to describe a migraine to someone who has never had one before, it's almost impossible.

The stiffness is worst in the mornings, or after I've been sitting or holding still for 10-15 minutes or more. Sometimes the deep pain hits in the middle of the night and wakes me up from a deep sleep. In my reply to @johnbishop I describe that I teach yoga and other fitness classes, so that has greatly helped me keep my mobility through this, but it's a struggle!

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I had PMR 3 years ago. treated with prednisone and resolved it. In the last six months I have felt that sharp pain at about my middle thigh down through my knee even into my calf. Particularly on the right side and some on the left. I finally went to see an orthopedic Dr. Mainly because I tried some leftover prednisone for 5 days and no change. He ordered an MRI of the thigh, xrays of the knee and both hips. I have severe Osteoarthritis with bone spurs of the right hip and moderate of the left. I am scheduled for hip replacement. I am almost 74. Steroids can mask many things. Not sure any of this fits you but as they say a pain in the ass may not be coming from the ass. Hopefully you can figure it out. good luck.

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Profile picture for tuckerp @tuckerp

I had PMR 3 years ago. treated with prednisone and resolved it. In the last six months I have felt that sharp pain at about my middle thigh down through my knee even into my calf. Particularly on the right side and some on the left. I finally went to see an orthopedic Dr. Mainly because I tried some leftover prednisone for 5 days and no change. He ordered an MRI of the thigh, xrays of the knee and both hips. I have severe Osteoarthritis with bone spurs of the right hip and moderate of the left. I am scheduled for hip replacement. I am almost 74. Steroids can mask many things. Not sure any of this fits you but as they say a pain in the ass may not be coming from the ass. Hopefully you can figure it out. good luck.

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@tuckerp because my inflammation markers are abnormal and my body is responding to Prednisone, it is thought that I have PMR and a question of GCA. I do have some degenerative issues of the LS spine but Rheumo thinks not enough to cause the degree of pain and fatigue and hours of morning stiffness that I had been experiencing.

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Profile picture for pah17 @pah17

@tuckerp because my inflammation markers are abnormal and my body is responding to Prednisone, it is thought that I have PMR and a question of GCA. I do have some degenerative issues of the LS spine but Rheumo thinks not enough to cause the degree of pain and fatigue and hours of morning stiffness that I had been experiencing.

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@pah17 Please ask them eliminate GCA. I have had PMR since 2019and finally went out of state to have asymptomatic GCA Dx. I had told my Rheumy many times that I had non standard PMR symptoms. She dismissed them. I am now facing significant health issues because of it. PMR is a default Dx, meaning it can not be tested for. Mistakes are made, advocate for yourself.

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I was similar to you. My symptoms were all in my hips and thighs. I had troubles with standing up from sitting, waking at 1-2am with pain in my hips and buttocks. Probably stiff in my shoulders My CRP and ESR were negative, but I responded immediately to prednisone. That was about 5 months ago. Since then I have been on 15mg prednisone, and when I started tapering, then I got flares that were more consistent with others: still hips and thigh pain, but now at times I could not lift my arms above my head. When that happens, I immediately went back up 2mg prednisone and felt better in about 12 hours.

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I wish I could take prednisone, since it seems to help the majority of people with PMR. I have a horrible reaction to it, so unfortunately that's not a possibility for me.

My allergy doctor gave me an injection of Kenalog / triamcinolone for intense springtime allergies a couple of days ago, so I'm paying attention to how that's affecting my "possible PMR" symptoms. Still aching on and off all day and night with stiffness, but not as intensely. I know Kenalog is different than prednisone, but I'm hoping it might at least take the edge off.

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