Questioning my diagnosis of PMR

Posted by barb01001 @barb01001, Jun 23 6:43am

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.

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

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.

REPLY

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.

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY

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.

REPLY
@linda7

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.

Jump to this post

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!

REPLY
@barb01001

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!

Jump to this post

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/

REPLY

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.

REPLY

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.

REPLY

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.

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY
Please sign in or register to post a reply.
  Request Appointment