Knee pain and PMR?
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.
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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?
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2 ReactionsI 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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1 ReactionAn 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.
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?
I was diagnosed with PMR in March 2025. I have been on actemra since that time(9) months. Although I am much better, as in I regained my regular weight, I am not tired all the time I don’t have chronic stiffness throughout my arms, legs, neck, I am also having leg issues, especially in my right leg. I have gone back on prednisone for short periods of time and that helps slightly, but it doesn’t last. I will probably see an orthopedic physician next, but I never had any leg issues or knee issues or tightness in my thigh until the PMR started so I think it’s all related. My rheumatologist recently put me on. Hydroxychloroquine but said it takes a while to kick in. It is also something to calm down. Inflammation. when this whole PMR issue began the first few doctors I had seen never even mentioned this, but one doctor put me on Cymbalta for nerve pain and although it helped somewhat, I was obviously having a great deal of trouble with weakness and stiffness. As of last week, I am starting to taper off my 60 mg of Cymbalta because I’m concerned about the amount of medications that I am taking . I have found this PMR to be quite a mystery disease and find that I am a mystery to myself these days. My rheumatologist isn’t sure that my leg/the issue is due to the PMR, but I think it is because I never had this issue before plus being that I am an active person and have exercised for many years anytime. I actually hurt myself from overuse, if I took time off, it would go away where this does not go away.
also, my Knee pain started in the back of my knee and back of my thigh. came out of nowhere.
I had/have knee pain in my pes anserine bursa on both knees while having active PMR. In fact, in retrospect it was the rt. knee bursa that started to hurt before the shoulders and hips. I think PMR goes for the "weak" areas first.For example, my hand even hurt . I had had hand surgery for trigger finger and Dupeytrans contracture about a year before the PMR came on. I know I have some cartilage damage in the rt. knee but without PMR it does not bother me like this ache. The achy bursa makes the entire knee hurt. Take a look at the bursa I mentioned and its location with a google search. I now see these aches as, for me, "bellwethers" for PMR. I might have had PMR in the past lasting a short while (1-2 weeks) because I know I have had this knee and shoulder bursa come on out of the blue and go away as fast.
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1 Reaction@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.
Knees: I have great knees and very little pain except for when my inflammation numbers are high.
Only my right knee will hurt on the back side and I cannot straighten the knee out nor put weight on it. I carried crutches in my car as I never knew when the knee would freeze up.
Frozen knee works like a precursor that my inflammation (PMR) is high.
Before PMR diagnosis I would take advil and elevate knee. Knee would be ok after a few hours and then for a few days. Knee doc X-rayed, etc.. and said both my knees look good. Knee pain should be followed in your PMR notes just in case.
Now I will go to rhuem doc rather than knee doc when symptoms return.
I am also on low dose with soreness in the back of my knees. Pain in shoulders/arms/hips has decreased. I notice the knee stiffness when I get up from sitting, too. I would like to travel again but worried about sitting on the plane. Good luck, please let us know what your rheumatologist says.
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