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.

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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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@dadcue
This sciatica conversation is interesting to me because I have spinal stenosis, arthritis, spondoloslesthesis(sp?), etc in my spine. Before the confirmed PMR diagnosis I was noticing leg pain which I attributed to walking incorrectly when I injured my foot and that my alignment was compromised. So I start on prednisone and my body pain was alleviated but my back pain was not. So not sure if it was due to the PMR or walking incorrectly as they happened concurrently. I had to spend time at the chiropractor and time healing my spinal issue. Seems to be much better now.

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Profile picture for caroljeand @caroljeand

@dadcue
This sciatica conversation is interesting to me because I have spinal stenosis, arthritis, spondoloslesthesis(sp?), etc in my spine. Before the confirmed PMR diagnosis I was noticing leg pain which I attributed to walking incorrectly when I injured my foot and that my alignment was compromised. So I start on prednisone and my body pain was alleviated but my back pain was not. So not sure if it was due to the PMR or walking incorrectly as they happened concurrently. I had to spend time at the chiropractor and time healing my spinal issue. Seems to be much better now.

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@caroljeand

I'm familiar with spondylolisthesis. It is a spinal condition where one vertebra slips forward over the one below it, most commonly in the lower back. Symptoms can range from none to severe, including low back pain, leg pain, numbness, tingling, and muscle tightness in the hamstrings. This is why the surgeon wants to fuse my spine.

I don't think of PMR as an "isolated condition" anymore. I have been diagnosed with multiple autoimmune conditions. I'm not sure how my lumbar spine got so bad but it is called "degenerative." Prednisone relieved whatever back pain I ever had so I suspect it was "inflammatory" in nature. After the damage is done, it doesn't really matter what causes it.

My rheumatologist doesn't refer to any specific diagnosis anymore. The last time I asked ... PMR was my primary diagnosis and Actemra targeted PMR. My rheumatologist has acknowledged that I have a "full range" of rheumatic problems. We don't talk about anything specific anymore other than "systemic inflammation."

Fortunately, Actemra works well for my inflammation and I'm off Prednisone after decades of taking Prednisone. At this stage, except for rapid pain relief, I think prednisone did more harm than good.

After PMR was diagnosed, prednisone never stopped the pain from recurring whenever I tried to tapered off, Prior to being diagnosed with PMR, my ophthalmologist said I was very skilled with tapering off prednisone. My ophthalmologist wasn't treating GCA but something else called uveitis which often caused recurrent flares and could cause vision loss. High doses of Prednisone (60-100 mg) followed by a fast taper always put uveitis back into remission for at least a year or two until it recurred more often.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734

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Profile picture for Mike @dadcue

@caroljeand

I'm familiar with spondylolisthesis. It is a spinal condition where one vertebra slips forward over the one below it, most commonly in the lower back. Symptoms can range from none to severe, including low back pain, leg pain, numbness, tingling, and muscle tightness in the hamstrings. This is why the surgeon wants to fuse my spine.

I don't think of PMR as an "isolated condition" anymore. I have been diagnosed with multiple autoimmune conditions. I'm not sure how my lumbar spine got so bad but it is called "degenerative." Prednisone relieved whatever back pain I ever had so I suspect it was "inflammatory" in nature. After the damage is done, it doesn't really matter what causes it.

My rheumatologist doesn't refer to any specific diagnosis anymore. The last time I asked ... PMR was my primary diagnosis and Actemra targeted PMR. My rheumatologist has acknowledged that I have a "full range" of rheumatic problems. We don't talk about anything specific anymore other than "systemic inflammation."

Fortunately, Actemra works well for my inflammation and I'm off Prednisone after decades of taking Prednisone. At this stage, except for rapid pain relief, I think prednisone did more harm than good.

After PMR was diagnosed, prednisone never stopped the pain from recurring whenever I tried to tapered off, Prior to being diagnosed with PMR, my ophthalmologist said I was very skilled with tapering off prednisone. My ophthalmologist wasn't treating GCA but something else called uveitis which often caused recurrent flares and could cause vision loss. High doses of Prednisone (60-100 mg) followed by a fast taper always put uveitis back into remission for at least a year or two until it recurred more often.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734

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@dadcue
Well I have degenerative disc disease as well so my spine is a mess but have tried to maintain function by proper exercise and maintenance.
I started on prednisone late August of this year so hope to get rid of it soon. I’ve taken two kevzara injections so far and see my rheumatologist on Monday. Anxious to hear what she has to say on my progress.
I do not have much physical pain and have tapered well from 15 mg originally to 7.5 mg now.
Hopefully I do not morph into GCA or the eye condition you have.
My mother was on prednisone for PMR for 15 years back in the 80’s and 90’s so hopefully I do not follow in those footsteps!

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