1. < Polymyalgia Rheumatica (PMR)
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Pain in legs with PMR

Posted by tomek456 @tomek456, Oct 1, 2025

Has anyone experienced severe buttocks pain and running all the way down into your shins and calves? My Rheumatologist says that is more likely a back nerve compression issue when it gets below the knees. But my spine doctor doesn't think that is the issue even though my MRI shows moderate spinal stenosis and a herniated disk. To my amazement, when I mentioned PMR, he asked what is that! It takes months to see a doctor and when you do they tell you go see another doctor! Meanwhile I'm in a lot of pain and the poison, prednisone.

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joanmm | @joanmm | Dec 4, 2025

The rheumatologist has suggested 15 mg for 2 wk, 12.5 for 2 wk, 10 mg for 2 wk and then taper by 1 mg per month. I had met a rheumatologist from the US while in Mexico and he just goes down to 10 mg and stops, but the guidelines might be different in Canada. Not sure. It does sound like a lot of you on this site taper down. Has anyone just stopped after 10 mg?

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kayept | @kayept | Dec 4, 2025

My symptoms began in my hips thighs and calves, as well as shoulders. What I termed a seering hot pain, like you describe. Often like my muscles were being torn off my bones. Made me drop in my tracks. Ine did relent after noon most days. OK, enough of that.
Once I started the prednisone, it was a 3 day miraculous turn around. Started at 15 mg and I 'self medicated' to 10 mg in 4 weeks and now maintain there. I seem to be an outlier, so far, with this 'spot on' diagnosis and treatment. However; one must always keep in mind, rheumatic diseases are fikle, they can manifest differently in a variety of situations.
Sometimes more info is more confusing. Sometimes you find you get what you need!

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farnhamlaf1 | @farnhamlaf1 | Dec 5, 2025

My symptoms have also gone to behind my knees an calves.
Dr said that’s not a typical PMR symptom….

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aisp3b | @aisp3b | Dec 6, 2025
In reply to @farnhamlaf1 "My symptoms have also gone to behind my knees an calves. Dr said that’s not a..." + (show)
Profile picture for farnhamlaf1 @farnhamlaf1

My symptoms have also gone to behind my knees an calves.
Dr said that’s not a typical PMR symptom….

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@farnhamlaf1 My pain has also gone behind my knees.

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farnhamlaf1 | @farnhamlaf1 | Dec 6, 2025

My dr does not want kevzara. Said it’s too harsh

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pah17 | @pah17 | Aug 19 9:54pm
In reply to @pattiobrien111 "Hello Tomek, Shin pain was my first symptom with a f/u diagnosis of PMR and subsequent..." + (show)
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Hello Tomek,
Shin pain was my first symptom with a f/u diagnosis of PMR and subsequent hospitalisation a month later. My other presenting symptoms were chills, low grade fevers, fatigue and elevated heart rate, along with knee pain which was presumed to be osteoarthritis from an old knee injury. My CRP was 90! The knee tap negative for sepsis. But not one doctor addressed such a high CRP. I also had a dry cough. I could not walk my knee was so bad. Second trip to the ER I was admitted and they threw the book at me with every known test. All indications were PMR and pseudo gout of my knee. I had the Covid virus 2 months prior. Never felt quite right. In essence, I would say PMR symptoms won’t necessarily fall into a classic “tidy” presentation. Also, covid is complicit in many maladies and spurring on autoimmune issues. The research supporting this is out there. PMR is an inflammatory disease and thought to be autoimmune. Managing it can be challenging and diverse for each of us. I wish you well in finding better health.

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@pattiobrien111 Patti H here. May I ask how are you these days? I have similar maladies as you.

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franklinlala | @franklinlala | Aug 21 12:27am

I don’t understand why doctors make comments that pain behind the knees or in the calves is not typical of PMR. The worst of my pain was bilaterally from the hips all the way down my legs, back of the knees, calves, all of it. The pain in my shoulders was minimal next to the legs. I think it’s clear, doctors do not give the leeway for this disease it deserves. It is clearly not the same for everyone.

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eparnold0219 | @eparnold0219 | Aug 22 7:03am
In reply to @franklinlala "I don’t understand why doctors make comments that pain behind the knees or in the calves..." + (show)
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I don’t understand why doctors make comments that pain behind the knees or in the calves is not typical of PMR. The worst of my pain was bilaterally from the hips all the way down my legs, back of the knees, calves, all of it. The pain in my shoulders was minimal next to the legs. I think it’s clear, doctors do not give the leeway for this disease it deserves. It is clearly not the same for everyone.

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@franklinlala I too, have pain behind my knees and calves, especially left side. 8 months of the disease my left shoulder toi over as the primary pain source, but that may have been due to over-working it in the gym and PMR took advantage. I have realized that PMR is not the only source of issues as some may be caused by Prednisone.

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boomermeg | @boomermeg | Aug 22 11:05am
In reply to @jabrown0407 "@sjc123 The thigh pain is all the way around my thigh. No portion of my thighs..." + (show)
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@sjc123 The thigh pain is all the way around my thigh. No portion of my thighs were excluded. The pain is constant, totally unrelenting. Searing pain feels like there is heat being generated internally as the source of the pain. Yet placing your hand on the skin there is no warmth. Not only did the Sports Medicine doctor confirm that PMR could be the cause, my PCP did as well as my Rheumy and Dr Google. However, I have recently been diagnosed with vasculitis, which has a lot of overlap pain wise and inflammation wise with PMR. Parsing what belongs in which bucket is impossible.

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@jabrown0407
Just from reading comments here, as well as my own experience with what parts of my body were affected, it seems pretty obvious it can manifest differently in each person. It seems like the patients themselves know better in so many cases, but yes, we can have different issues that overlap the same areas. May we all get the help we need and be able to taper down as slowly as needed to not suffer further. Blessings.

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franklinlala | @franklinlala | Aug 22 9:58pm
In reply to @eparnold0219 "@franklinlala I too, have pain behind my knees and calves, especially left side. 8 months of..." + (show)
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@franklinlala I too, have pain behind my knees and calves, especially left side. 8 months of the disease my left shoulder toi over as the primary pain source, but that may have been due to over-working it in the gym and PMR took advantage. I have realized that PMR is not the only source of issues as some may be caused by Prednisone.

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@eparnold0219 You’re absolutely right. PMR and prednisone can cause issues with tendons. Rotator cuff tendinopathy can occur with high or longer dose prednisone use. It’s hard to know what is causing what. We want to keep our muscles strong but need to be careful not to do damage at the same time. I’ve been told no heavy weights. Keep things light and easy focusing on stretching and range of motion. Walking and water resistance exercises are good. Excellent you are trying to keep yourself healthy despite the PMR. I hope with some rest your shoulder improves.

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