1. < Polymyalgia Rheumatica (PMR)

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.

Mentor
John, Volunteer Mentor | @johnbishop | Jun 3 7:38am
In reply to @nan50 "Diagnosed three years ago, and have tapered to a very low dose of prednisone. Although shoulder..." + (show)
@nan50

Diagnosed three years ago, and have tapered to a very low dose of prednisone. Although shoulder pain and stiffness have significantly decreased, hip, and at times, groin pain remain. Recently, a new stiffness and pain along the inside and back of both knees has appeared, making walking, climbing steps, getting up from sitting, and fully bending knees difficult. I’m seeing an orthopedist, but I suspect it’s related to PMR. I’m also seeing my rheumatologist this week, and will see.

Jump to this post

Welcome @nan50, It's good to hear that you have tapered to a low dose of prednisone and hopefully continue tapering until your PMR pain goes away. My first time with PMR took me three and half years to taper off but I still had some minor aches and pains in the early morning until I was able to move around some. The PMR did come back six years later but I was able to taper off of prednisone in a year and half, and that was a little over six years ago.

I still have shoulder and hand pain but I think mine is due to degenerative arthritis and carpal tunnel. Hoping you get some answers at your upcoming appointments with your rheumatologist. Can you let me know what you find out?

REPLY
jennyjune | @jennyjune | Jun 4 4:12am

I started with pain in my knees front and back last August 2024, it wasn’t until after Christmas that they found I had PMR, also a lot of pain in my neck and collarbone. I am on prednisone and methotrexate, 7mg of prednisone and 17my of methotrexate, each day is different in levels of pain, I’m due for a rheumatologist appointment but feel I’d rather push through the pain days and count my losses, not sure if the dose maybe should go up with the methotrexate. Exercise is a key factor, lots of stretching, aqua aerobics, walking, helps, but still not pain free. In five mths, I’ve had one almost pain free day, I was over the moon.
Good luck on your journey.
Jenny ☺️

REPLY
1 reply
Mike | @dadcue | Jun 4 5:43am
In reply to @jennyjune "I started with pain in my knees front and back last August 2024, it wasn’t until..." + (show)
@jennyjune

I started with pain in my knees front and back last August 2024, it wasn’t until after Christmas that they found I had PMR, also a lot of pain in my neck and collarbone. I am on prednisone and methotrexate, 7mg of prednisone and 17my of methotrexate, each day is different in levels of pain, I’m due for a rheumatologist appointment but feel I’d rather push through the pain days and count my losses, not sure if the dose maybe should go up with the methotrexate. Exercise is a key factor, lots of stretching, aqua aerobics, walking, helps, but still not pain free. In five mths, I’ve had one almost pain free day, I was over the moon.
Good luck on your journey.
Jenny ☺️

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An incredible number of people say 7 mg is where their pain returns. I wonder what is so special about 7 mg? My pain would resurface at 7 mg and eventually always had a flare and increased my Prednisone dose.

"Polymyalgia Rheumatica (PMR) can mimic symptoms of adrenal insufficiency, particularly glucocorticoid-induced adrenal insufficiency, which is a common side effect of PMR treatment. Adrenal insufficiency, in turn, can cause muscle aches and pains, mimicking PMR symptoms, making it difficult to distinguish between the two."

I'm not sure how the two conditions can be distinguished because the symptoms overlap. I came to the conclusion it was the combination of both PMR and adrenal insufficiency that only allowed me to taper to 7 mg where I inevitably increased my Prednisone dose.

Some people say Prednisone "mops up" inflammation. However if Prednisone needs to mop up inflammation every day it suggests excess inflammation is happening.

I believe it is cortisol that "regulates" inflammation. Prednisone replaces cortisol and stops the inflammation when we take enough prednisone. When we reach 7 mg of Prednisone we lack the cortisol to regulate inflammation because our adrenal function is suppressed. If we persist and taper lower than 7 mg the pain only gets worse and we tend to "flare."

it is very difficult to push through the pain when we reach 7 mg of Prednisone. More methotrexate might help but 7 mg of Prednisone will still suppress your adrenal function. How suppressed your adrenals are depends on how long you have taken Prednisone.

REPLY
1 reply
jennyjune | @jennyjune | Jun 5 2:37am
In reply to @dadcue "An incredible number of people say 7 mg is where their pain returns. I wonder what..." + (show)
@dadcue

An incredible number of people say 7 mg is where their pain returns. I wonder what is so special about 7 mg? My pain would resurface at 7 mg and eventually always had a flare and increased my Prednisone dose.

"Polymyalgia Rheumatica (PMR) can mimic symptoms of adrenal insufficiency, particularly glucocorticoid-induced adrenal insufficiency, which is a common side effect of PMR treatment. Adrenal insufficiency, in turn, can cause muscle aches and pains, mimicking PMR symptoms, making it difficult to distinguish between the two."

I'm not sure how the two conditions can be distinguished because the symptoms overlap. I came to the conclusion it was the combination of both PMR and adrenal insufficiency that only allowed me to taper to 7 mg where I inevitably increased my Prednisone dose.

Some people say Prednisone "mops up" inflammation. However if Prednisone needs to mop up inflammation every day it suggests excess inflammation is happening.

I believe it is cortisol that "regulates" inflammation. Prednisone replaces cortisol and stops the inflammation when we take enough prednisone. When we reach 7 mg of Prednisone we lack the cortisol to regulate inflammation because our adrenal function is suppressed. If we persist and taper lower than 7 mg the pain only gets worse and we tend to "flare."

it is very difficult to push through the pain when we reach 7 mg of Prednisone. More methotrexate might help but 7 mg of Prednisone will still suppress your adrenal function. How suppressed your adrenals are depends on how long you have taken Prednisone.

Jump to this post

Thank you so much @dadcue for all the information, it’s interesting what you’re not told.
How much prednisone are you taking? and I’ve only been on prednisone for nearly 7mths I started on 15mg and to be honest the pain was still the same as on the 7mg, I actually was hoping the methotrexate would have helped more by now but apparently that takes a while to take hold, I feel I’m damed if I do or damed if I don’t, if you don’t mind me asking what has been your highest prednisone dose?

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