Knee pain and PMR?

Posted by debbiebas216 @debbiebas216, 3 days ago

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.

You mentioned the pain being at the back of the knees. There is something similar called Bakers cyst that is painful. May Clinic has some information here on Bakers cyst - https://www.mayoclinic.org/diseases-conditions/bakers-cyst/symptoms-causes/syc-20369950.

Do you have any swelling behind the knees?

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I don’t think so. It would be like a golf ball?

My knees feel ok now. It’s mostly in the morning.

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Something else to consider, do you have good cushioned shoes? I jog and/or walk every day, and when my running shoes get old the backs of my knees will start to hurt.

If you started taking prednisone in late October, that really isn't very long to be treated. I think the average treatment for PMR is one to two years, and some people take much longer. Plus if you are having shoulder and hip pain, it sounds like your PMR isn't under control yet.

I have GCA and PMR, and I've been receiving treatment for almost 8 months. I'm down to 8 mg of prednisone and also take Actemra, and I expect to be on prednisone for at least 6 more months best case.

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Ok thanks. I’ll try changing my sneakers.

How is it on actemra? I see there are a few immunosuppressants out there. Any side effects?

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@debbiebas216

Ok thanks. I’ll try changing my sneakers.

How is it on actemra? I see there are a few immunosuppressants out there. Any side effects?

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The only side effect I've had is an increase in cholesterol so that I'll have to go on a statin. But the prednisone might have caused the high cholesterol too. Actemra lets you taper off of the prednisone faster and is supposed to result in fewer relapses.

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My knees were badly affected by PMR before prednisone, making bending the knees to sit and stand up from sitting very painful. At its worst I couldn't lower myself onto the toilet. The pain was in the connective tissues at the back and sides of the knees, not the knee joint itself. It was definitely PMR pain which has gone since being on prednisone.

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@jeff97

The only side effect I've had is an increase in cholesterol so that I'll have to go on a statin. But the prednisone might have caused the high cholesterol too. Actemra lets you taper off of the prednisone faster and is supposed to result in fewer relapses.

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Thank you so much. I will mention this to my rheumatologist.

I’m already on a statin and my latest blood test showed my cholesterol at 168 which I’m happy with.

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Much of my pain was knees, behind the knees only. Also hips and shoulders, but the behind the knees was the worst.

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@mt28

Much of my pain was knees, behind the knees only. Also hips and shoulders, but the behind the knees was the worst.

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Thanks. Me too but mostly the mornings.

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Yes for me. Pain in the back of the knees with knee flexion and aggravated by sitting/inactivity. This developed later in my course with PMR, or maybe it just became more obvious when some of the other pains (hips, shoulders) subsided. When I reported it to my rheumatologist, he thought it was unrelated to the PMR, but I’m not buying it. I did have a Baker’s cyst when I was younger, and this time around I don’t have that “golf ball” swelling in either knee. The inflammation settles in such odd places with PMR, and the medical understanding of the disease seems incomplete.

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