1. < Polymyalgia Rheumatica (PMR)

Questioning my diagnosis of PMR

Posted by barb01001 @barb01001, Jun 23, 2022

I am a 72 year old female. I started having symptoms 5 years ago. It came on very suddenly as weakness in my legs. I never considered it pain. I feel like my legs are not going to hold me up. My PCP referred me to an orthopedic surgeon who decided it was referred pain. This made no sense to me as my knees never bother me. Injections in my knees did not help. In January of 2021 my legs completely gave out. I was unable to get myself out of a chair and had to call 911. After the ER, I was sent to rehab, where I was put on steroids which quickly got me up and around.
I was referred to a local rheumatologist who also told me it was referred pain. Since I live in western Mass I contacted a hospital in Boston and saw a rheumatologist there. He did not accept the referred pain idea although he did say my presentation was very unusual. I was sent for numerous tests including a nerve conduction study. Every test comes back negative. He also had me seen by a neurologist who determined there was no neurological involvement. In the end I was given a working diagnosis of PMR. All my issues are in my legs, nothing above the waist and my knees are fine.
My biggest struggle is raising my legs. Navigating stairs is a major challenge. I have to hold onto a banister with both hands and pull myself up using the banister and door jam. Stepping off or onto a curb is also difficult. I can walk for short periods of time, up to 20 minutes before needing a break. I am constantly tired.
I am on 8mg of prednisone now and am supposed to decrease to 7mg in July. I really want to step it up to 10mg to see if I get relief. I tried 15 mg of Methotrexate as a sparing agent and that did not help. I am currently on 10 mg of Lefunomide without improvement.
As I read the comments of others, I wonder if indeed I do have PMR. I do not experience pain, or possibly I just think of it differently. I’m not sure what people experience when they go into remission or have flair ups. My symptoms are constant. With the exception of my bout in the hospital, which left me with the difficulty navigating stairs, I feel my condition is unchanged.
Your anticipated comments will be most appreciated. Thank you for taking the time to read this.

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suetex | @suetex | Jun 25, 2022
In reply to @jabrown0407 "I too only have problems from my waist down. I have chosen not to take steroids..." + (show)
@jabrown0407

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.

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Very interesting. I am going to look into this. Thank you for posting.

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barb01001 | @barb01001 | Jun 25, 2022
In reply to @jabrown0407 "I too only have problems from my waist down. I have chosen not to take steroids..." + (show)
@jabrown0407

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.

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Thanks so much. I will certainly do some research on this.

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1 reply
jabrown0407 | @jabrown0407 | Jun 25, 2022
In reply to @barb01001 "Thanks so much. I will certainly do some research on this." + (show)
@barb01001

Thanks so much. I will certainly do some research on this.

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You are welcome. My orthopedic doctor is a well-known specialist in hip preservation and actually lives out of state. He comes in weekly to see patients in the Dallas area. I had to go to a specific imaging center since that is where he had trained them to do the special position x-ray that clearly showed my impingement. Usually I see little on x-rays but this I could see clearly. I did research and found little on the topic online and nothing on the need to walk with your feet apart - so if you do find anything please share a link here on Mayo Connect.

I decided to share this treatment story since it is easy, no drugs and the results will be immediate. Trying to walk, sit and stand with your feet apart is an easy life style change to try. Of course it is possible that you do not have the impingement problem and thus the feet apart effort will make little difference. Once I did it for about a month it did become second nature. I'm thinking that's because it helped the pain and my mind and body was all in.

I wish you success on your PMR journey.

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floridabonnie | @floridabonnie | Jun 30, 2022
In reply to @linda7 "I am 72, have had PMR for over a year now, on prednisone for almost a..." + (show)
@linda7

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.

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I have had this PMR since 4/2021. I have been tapering down since October, but have noticed a heaviness in my whole body. When I get up to walk, it feels like my legs don't want to support me, especially through the hip, girdle area. I have no real pain except in my neck and knees at night. I am able to lift myself out of a chair, but not up off the floor if I get down with my young grandson. I have gone down to 2 mg a day, but am feeling worse every day. I am thinking of going back to 10 and see what that does. I hate this tired heavy feeling in my legs. Is this the PMR, or something else?? At 73 years old, you never know.

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1 reply
linda7 | @linda7 | Jul 1, 2022
In reply to @floridabonnie "I have had this PMR since 4/2021. I have been tapering down since October, but have..." + (show)
@floridabonnie

I have had this PMR since 4/2021. I have been tapering down since October, but have noticed a heaviness in my whole body. When I get up to walk, it feels like my legs don't want to support me, especially through the hip, girdle area. I have no real pain except in my neck and knees at night. I am able to lift myself out of a chair, but not up off the floor if I get down with my young grandson. I have gone down to 2 mg a day, but am feeling worse every day. I am thinking of going back to 10 and see what that does. I hate this tired heavy feeling in my legs. Is this the PMR, or something else?? At 73 years old, you never know.

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When I get a new symptom I ask myself if I had anything like that before I got PMR. Is this weakness and heaviness new for you? If so it is likely related to PMR. Feeling worse every day does not sound good. Both times that I got a flare it was pain and symptoms that got worse rather than better with time on the same prednisone dose. I do not change dosage without consulting my rheumatologist. I'm the expert on my body but he has knowledge and experience that I do not have.

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1 reply
floridabonnie | @floridabonnie | Jul 1, 2022
In reply to @linda7 "When I get a new symptom I ask myself if I had anything like that before..." + (show)
@linda7

When I get a new symptom I ask myself if I had anything like that before I got PMR. Is this weakness and heaviness new for you? If so it is likely related to PMR. Feeling worse every day does not sound good. Both times that I got a flare it was pain and symptoms that got worse rather than better with time on the same prednisone dose. I do not change dosage without consulting my rheumatologist. I'm the expert on my body but he has knowledge and experience that I do not have.

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It is so hard to remember back a year ago, I remember pain in my joints and had MRI"s done because I have had degenerative disc disease for many years and it usually means a herniated disc. I have had 5 surgeries on my spine from the discs going. All of the MRI's were fine, no herniation to cause what was happening. Along with the pain, was an inability to lift my legs or lift my body out of a chair. I am usually a very active person. I swim regularly, go to the gym 2-3 times a week and do the circuit machines along with going 3 miles on the treadmill. That was a normal thing for me along with mowing my own lawn and maintaining my pool and my home. Now I get tired walking around the block. My legs get a hard to move feeling in them, but the pain is not there. I am so confused. I have never in my life felt like this, and I remember when I first started the prednisone, at 25 or 30 mg a day, I felt more energized and pain free. Now the pain is gone, except in my neck and shoulders, but my legs are getting heavy feeling. I am 5'8" and weigh 139, so I am not "heavy", but I feel it. I got down to 1 or 2 mg per day, and the feeling of tiredness and heaviness grew. It is definately a new feeling and not a good one.

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1 reply
linda7 | @linda7 | Jul 1, 2022
In reply to @floridabonnie "It is so hard to remember back a year ago, I remember pain in my joints..." + (show)
@floridabonnie

It is so hard to remember back a year ago, I remember pain in my joints and had MRI"s done because I have had degenerative disc disease for many years and it usually means a herniated disc. I have had 5 surgeries on my spine from the discs going. All of the MRI's were fine, no herniation to cause what was happening. Along with the pain, was an inability to lift my legs or lift my body out of a chair. I am usually a very active person. I swim regularly, go to the gym 2-3 times a week and do the circuit machines along with going 3 miles on the treadmill. That was a normal thing for me along with mowing my own lawn and maintaining my pool and my home. Now I get tired walking around the block. My legs get a hard to move feeling in them, but the pain is not there. I am so confused. I have never in my life felt like this, and I remember when I first started the prednisone, at 25 or 30 mg a day, I felt more energized and pain free. Now the pain is gone, except in my neck and shoulders, but my legs are getting heavy feeling. I am 5'8" and weigh 139, so I am not "heavy", but I feel it. I got down to 1 or 2 mg per day, and the feeling of tiredness and heaviness grew. It is definately a new feeling and not a good one.

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I would suggest talking to your doctor about increasing the prednisone. 2 mg is quite a low dose. I've had PMR about the same length of time as you and the lowest I got was 6 mg. I'm on 10 mg now and doing well but soon to see the doctor and probably start the taper again. Like you I was very active, able to hike and bike uphill, do my yard work and home maintenance. I can do those things now, just not as much, as far or as fast. When I was on lower doses there was pain, but it was fatigue and overall poor function and quality of life that caused me to call the doctor and get back on a higher dose.

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1 reply
floridabonnie | @floridabonnie | Jul 1, 2022
In reply to @linda7 "I would suggest talking to your doctor about increasing the prednisone. 2 mg is quite a..." + (show)
@linda7

I would suggest talking to your doctor about increasing the prednisone. 2 mg is quite a low dose. I've had PMR about the same length of time as you and the lowest I got was 6 mg. I'm on 10 mg now and doing well but soon to see the doctor and probably start the taper again. Like you I was very active, able to hike and bike uphill, do my yard work and home maintenance. I can do those things now, just not as much, as far or as fast. When I was on lower doses there was pain, but it was fatigue and overall poor function and quality of life that caused me to call the doctor and get back on a higher dose.

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I think you are right, I will give him a call. I am not due to see him again until August, and that is too long to wait. I was supposed to see him this month, but had to cancel due to a death in the family. Good luck to you, and thanks for the help!

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