Knee pain and PMR?

Posted by debbiebas216 @debbiebas216, Feb 15 2:51pm

I was diagnosed with PMR the end of October 2024 and have been on prednisone ever since and tapering. Right now I just increased from
8 mg to 9 mg (sometimes accompanying with Tylenol arthritis tablets) with pain typically shoulders and hips but it’s been somewhat manageable. My knees have been pretty painful (only after my diagnosis) mostly in the morning and if I sit for too long (1/2 hour or longer). Getting up from a sitting position is rough. My rheumatologist feels it’s not PMR related. I will make an appointment with my orthopedic to further check it out.
Does anyone else experience pain in their knees (mostly the back) and do you think it’s part of PMR? She also would like me to go on leflunomide, an immunosuppressant which is very scary to me that I’m avoiding. I believe besides being on leflunomide, I still have to stay on prednisone until I wean off of it. I live in the north east and the flu, rsv, etc right now is rampant and, in my mind, that puts a halt on my immune system leaving me susceptible to any one of those viruses (and cancer). I also read that it has a slow half life that could take 2 years to leave my system.
I just think that if I’m functioning, even with pain, I should stay the course on prednisone for now because prednisone is not a cure, but a med to reduce inflammation? So confused.

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

Diagnosed April of 2025. Have just started getting pain in my right knee. Feel it upon waking. Soon as I start walking it goes away. I do have pain in my shoulders, upper arms, hips and hamstrings. Heating pad on 150 takes the edge off. I find I never know where the pain will be the worst each day. Dang frustrating as in any time of day it will feel better and then like a switch gets flipped and becomes terrible again.

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In October '25, I started to have bad right knee pain. Went to an orthopedic surgeon, had an MRI and was told it was a minicus issue. I took a cordisone shot in my knee and all was well. Soon after, the PMR showed up bilaterally in my shoulders and then my hips. I have been on Methylprednisolone since Dec 10, 2025. I started on 20mg per day. I did pretty good reducing all the way down to 2 mg/day. Sometimes I added Extra Strength Tylenol when I decreased the dose along the way. All was pretty good. Now I am down to 2 mg and my right knee is giving me the same pain I had just before I got PMR. Seems there is some kind of relationship between the knee pain and PMR.

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Profile picture for mun68 @mun68

@bren0718 I do have pain behind my knee. Especially my right knee. It’s also in my hamstring my right hamstring at times and it goes to the side of my knee and also to my calf which is so stiff that it feels like I have a Charlie horse in the calf, since I was diagnosed with PMR last February prednisone has helped greatly and I’m also on actemra infusions but I feel like this is a tricky and mysterious disease. It seems to travel around. In the summer. I was having major stiffness, and I assumed it was Achilles tendinitis in my left leg that went on for a couple months now that leg seems better, but my right leg is bothering me. I had none of these issues before being diagnosed with PMR.

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@mun68
I have to agree on the bellwether comment. I had been having sore sit bones for a while just before getting diagnosed with PMR. My primary care stated she thought it could be bursitis.
The soreness comes and goes and I can be sitting on something soft and it can be sore.
I think it was a forerunner of pending PMR and when I cut my heel I think the trauma of the severe injury was the straw that broke the camel’s back.

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Profile picture for aisp3b @aisp3b

In October '25, I started to have bad right knee pain. Went to an orthopedic surgeon, had an MRI and was told it was a minicus issue. I took a cordisone shot in my knee and all was well. Soon after, the PMR showed up bilaterally in my shoulders and then my hips. I have been on Methylprednisolone since Dec 10, 2025. I started on 20mg per day. I did pretty good reducing all the way down to 2 mg/day. Sometimes I added Extra Strength Tylenol when I decreased the dose along the way. All was pretty good. Now I am down to 2 mg and my right knee is giving me the same pain I had just before I got PMR. Seems there is some kind of relationship between the knee pain and PMR.

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@aisp3b Must correct my own error above... It was October '24, NOT October '25.

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Profile picture for mun68 @mun68

also, my Knee pain started in the back of my knee and back of my thigh. came out of nowhere.

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@mun68 me, too

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Profile picture for mun68 @mun68

@bren0718 I do have pain behind my knee. Especially my right knee. It’s also in my hamstring my right hamstring at times and it goes to the side of my knee and also to my calf which is so stiff that it feels like I have a Charlie horse in the calf, since I was diagnosed with PMR last February prednisone has helped greatly and I’m also on actemra infusions but I feel like this is a tricky and mysterious disease. It seems to travel around. In the summer. I was having major stiffness, and I assumed it was Achilles tendinitis in my left leg that went on for a couple months now that leg seems better, but my right leg is bothering me. I had none of these issues before being diagnosed with PMR.

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@mun68
Interesting we both have right knee rather than both knee pain. All my other PMR pain is on both sides of my body at the same time. I will mention this to my rhuem doc on next visit to make sure he knows about this. I appreciate others that have answered here.

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Profile picture for caroljeand @caroljeand

@mun68
I have to agree on the bellwether comment. I had been having sore sit bones for a while just before getting diagnosed with PMR. My primary care stated she thought it could be bursitis.
The soreness comes and goes and I can be sitting on something soft and it can be sore.
I think it was a forerunner of pending PMR and when I cut my heel I think the trauma of the severe injury was the straw that broke the camel’s back.

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@caroljeand knee pain behind my right knee. Definitely PMR affecting tendons

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Profile picture for leonalawrence @leonalawrence

@mun68
Interesting we both have right knee rather than both knee pain. All my other PMR pain is on both sides of my body at the same time. I will mention this to my rhuem doc on next visit to make sure he knows about this. I appreciate others that have answered here.

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@leonalawrence when my PMR started last summer I thought I had severe sciatica because I had so much pain in the glutes and thigh and it went all the way down into my calf and it was really excruciating and that’s why my general practitioner put me on Cymbalta for nerve pain but as time went on, it eventually went to both sides of my body and also went into my shoulders. Lifting the coffee pot in the morning was like lifting a few bricks with one hand, and I could hardly lift my arms to comb my hair I had to tilt my head sideways and even then I could only lift my arm halfway up. So since starting on prednisone and then Actenra I’ve come a long way! And I’m happy to say that because except for the knee pain which is now in my calf I am doing pretty well . that said, it’s still a very mysterious disease. You never know where it’s going to show up and even though the medication‘s calm down the inflammation it seems to be always there hiding and waiting to pop up somewhere. Good luck on your journey!

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Profile picture for mun68 @mun68

@leonalawrence when my PMR started last summer I thought I had severe sciatica because I had so much pain in the glutes and thigh and it went all the way down into my calf and it was really excruciating and that’s why my general practitioner put me on Cymbalta for nerve pain but as time went on, it eventually went to both sides of my body and also went into my shoulders. Lifting the coffee pot in the morning was like lifting a few bricks with one hand, and I could hardly lift my arms to comb my hair I had to tilt my head sideways and even then I could only lift my arm halfway up. So since starting on prednisone and then Actenra I’ve come a long way! And I’m happy to say that because except for the knee pain which is now in my calf I am doing pretty well . that said, it’s still a very mysterious disease. You never know where it’s going to show up and even though the medication‘s calm down the inflammation it seems to be always there hiding and waiting to pop up somewhere. Good luck on your journey!

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@mun68

I know that sciatic pain you are referring to --- it was soooo painful, I thought I would die just from the pain alone.

The sciatic pain was while I was still on Prednisone for PMR. Someone said the pain was piriformis syndrome which was common with PMR. My PCP disputed this and said piriformis syndrome was "not common" with PMR.

My PCP was able to do a complete physical exam and noted that I had lost the reflexes in both legs. He was also concerned that I had foot drop on the right along with generalized leg weakness. I didn't have too much pain at the time because I took 60 mg of Prednisone when the pain was extreme. I actually thought "things were good" and I didn't think anything was that wrong.

My PCP ordered an urgent MRI which showed severe lumbar stenosis. My good feeling soon unraveled when I was referred to an orthopedic surgeon who said I urgently needed a multilevel lumbar fusion.

The orthopedic surgeon was concerned about how much Prednisone I was taking. He didn't think the bone in my spine would be dense enough to hold all the hardware needed to fuse my lumbar spine. He immediately wanted me to get a bone scan to check for osteoporosis. I think the surgeon was stalling for time because he also ordered an EMG and NCS (nerve conduction study) only to "delineate the damage" already done.

This was a distant chapter in my PMR/Prednisone journey. My rheumatologist reviewed the MRI results with me. She said she was happy the pain went away but I shouldn't have taken so much Prednisone.

Just as an update ... I have seen two neurosurgeons since the first episode of radicular leg pain. My lumbar stenosis is still severe. I'm off Prednisone but I still don't have too much pain. I still have lower extremity weakness, foot drop on the right and generalized numbness in my legs and feet. I have leg pain if I am honest about it. I have knee pain but both knees have already been replaced.

I still need a lumbar fusion but I deny pain. My PCP doesn't believe me. I'm on Actemra which keeps PMR in remission and that controls my pain. My PCP says Actemra only controls inflammation and it isn't a pain medication. She issued a rollator to me to "keep me mobile" when I told her that I never fall.

A neurosurgeon is prepared to do a lumbar fusion whenever I'm ready. I don't want to do surgery because I'm afraid of the pain the surgery will cause. My pain level is tolerable but the surgeon said it isn't about the pain anymore.

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Profile picture for Mike @dadcue

@mun68

I know that sciatic pain you are referring to --- it was soooo painful, I thought I would die just from the pain alone.

The sciatic pain was while I was still on Prednisone for PMR. Someone said the pain was piriformis syndrome which was common with PMR. My PCP disputed this and said piriformis syndrome was "not common" with PMR.

My PCP was able to do a complete physical exam and noted that I had lost the reflexes in both legs. He was also concerned that I had foot drop on the right along with generalized leg weakness. I didn't have too much pain at the time because I took 60 mg of Prednisone when the pain was extreme. I actually thought "things were good" and I didn't think anything was that wrong.

My PCP ordered an urgent MRI which showed severe lumbar stenosis. My good feeling soon unraveled when I was referred to an orthopedic surgeon who said I urgently needed a multilevel lumbar fusion.

The orthopedic surgeon was concerned about how much Prednisone I was taking. He didn't think the bone in my spine would be dense enough to hold all the hardware needed to fuse my lumbar spine. He immediately wanted me to get a bone scan to check for osteoporosis. I think the surgeon was stalling for time because he also ordered an EMG and NCS (nerve conduction study) only to "delineate the damage" already done.

This was a distant chapter in my PMR/Prednisone journey. My rheumatologist reviewed the MRI results with me. She said she was happy the pain went away but I shouldn't have taken so much Prednisone.

Just as an update ... I have seen two neurosurgeons since the first episode of radicular leg pain. My lumbar stenosis is still severe. I'm off Prednisone but I still don't have too much pain. I still have lower extremity weakness, foot drop on the right and generalized numbness in my legs and feet. I have leg pain if I am honest about it. I have knee pain but both knees have already been replaced.

I still need a lumbar fusion but I deny pain. My PCP doesn't believe me. I'm on Actemra which keeps PMR in remission and that controls my pain. My PCP says Actemra only controls inflammation and it isn't a pain medication. She issued a rollator to me to "keep me mobile" when I told her that I never fall.

A neurosurgeon is prepared to do a lumbar fusion whenever I'm ready. I don't want to do surgery because I'm afraid of the pain the surgery will cause. My pain level is tolerable but the surgeon said it isn't about the pain anymore.

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@dadcue WOW!!!!! Good Luck!!!! I mean that… I don’t know if I would do that lumbar surgery strictly because right now you seem to be functioning and your pain is tolerable and you never know with back surgery… Sometimes it makes things better but that’s not always the case. I was also told that I have severe stenosis with some of the discs, but before the PMR I did not have the issues that I started with last year, so although I do have stenosis, I think the PMR is the main culprit with all of the severe pain. I am not a doctor, but I know my own body and if the actemer can keep the inflammation down, I think that is the best thing you can do because at least you’re not on the prednisone which has so many side effects. I know anything we put into our body has affects, but you have to weigh the pain versus a possible side effect. It’s all about quality of life, especially when so many of the side effects are quite rare. Good luck and keep moving. I think that’s the best thing you can do keep moving and some days that’s hard with the PMR because it keeps showing up and it does make you feel like you hurt yourself, but you really didn’t. even though I feel bad that you had the same horrible glute and leg pain, it’s helpful to know that I was not going crazy because I kept saying what could this possibly be from? It took one doctor just one primary care physician to say this doesn’t make sense when I went to him a Cymbalta refill and, like I said before, although I still have issues as in having knee, calf pain in my right leg right now I am 1000% better than I was last year with my strength and my mobility and my lack of that awful extreme pain. Best wishes to all of us on this PMR journey! It’s nice to have people to talk this out with… It really is helpful

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