I haven’t posted here in a long time. I hope it’s ok to ask this here. I was diagnosed with PMR in 2017 and was on prednisolone for almost five years. I felt well when I finally got off them in April this year. I’m 55 now. Since then I have gradually felt my knees getting stiffer and more painful. I have great difficulty in kneeling or bending knees under me while on sofa (I always sat like this but can’t do it any longer) I feel it when I turn at night in bed. Painful and very stiff when in one position for any length of time. This has been gradually getting worse for months. Rheumatology sent me for X-ray and I’m waiting on results. I have a frozen shoulder also which they injected with steroids and that helped a bit. My other shoulder is sore every morning and I always stretch it to avoid it also getting frozen. I went to see my doc and she was baffled completely with knees. Did anyone ever have PMR begin from knees and shoulders rather than hips? I’m wondering is it all kicking off again? If you’re still reading thanks a lot 😊 I have gotten great advice here in the past and hoping maybe someone might have an idea what’s going on.
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Allsgrandso
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Off pred since April and symptoms beginning to appear - that is a perfectly reasonable timescale for a very low activity PMR that might only have needed 1/2mg a day to keep it under wraps. It does happen that PMR changes over time and it can involve knees, It isn't unusual for PMR and frozen shoulder to be confused either.
Hi PMRpro 😊 bloods are ok and neither doc nor rheumatologist think it’s PMR. I think I’ll get back onto rheumatologist and see what they can do. It’s awful, I just feel it’s getting worse and worse, need to hold on to arms of chair to pull myself up gradually. Flip sake 😩 thanks for your reply as always
It takes time for the inflammation to build up enough to cause the blood markers to rise and they can lag months behind the symptoms - that is why symptoms always trump the lab results.
Certainly could be return of PMR /not sure why doctor is confused -see knees affected in picture (blue outline) and as PMRpro says shoulders can be mis diagnosed as frozen when they aren’t…Have you had inflammation markers tested?
Hi DorsetLady, I think bloods were last done 6 weeks after I finished steroids. Crp and esr both normal levels. I’ll phone tomorrow and book to have them done again this week. Thanks for your reply and the diagram. 🙏
My post is only as I recall the events leading up to the diagnosis of my PMR in July 2020. In October 2019 I had crippling bilateral pains in my knees, and was due to go on a 4 continent trip to South East Asia. I was dreading it thinking I wouldn’t be able to cope with a gruelling trip. Had 2 steroid injections and was fine. I noticed that I began to sweat on my forehead a bit which was unusual. The following March 2020 had an influenzal like illness which resulted in days of asthenia until July 2020 when GP diagnosed PMR. Knees and turning over in bed were the first symptoms that I experienced. Hope you get it sorted very soon and you feel better as well. 🌺
Hi Autumnlass, thanks very much for taking the time to reply. That’s really interesting it was your knees first! My doc said no definitely not PMR 🤷♀️ It shouldn’t affect knees! I don’t fancy the idea of steroids again after 5 years tapering 🤦♀️ I’m a bit fed up to say the least. I remember my first symptom in early 2017 was a creak in my neck that wouldn’t go away.
I wish I knew why they think it doesn't involve knees - there are studies about it!
"Our findings suggest that bilateral capsulitis of the knee is detectable in most PMR/GCA patients if a sensitive imaging technique such as PET/CT is used."
Omg 😳 I’ve bookmarked this to show my rheumatologist. I really don’t want this again.. sorry who does 😒 thanks PMRpro much appreciated! Why do they not know this!! Very infuriating
Because they read the textbooks - and WE know the textbook patient exists in the textbook and nowhere else. It's our specialist subject and we read anything we can lay our hands on that comes from reputable sources. The Italian and Spanish groups are pretty good - but I find doctors in the UK very dismissive of work from elsewhere.
Why aren’t you advising them. It would benefit us all greatly. If you have kniwledge like this, why haven’t they. Good job we have you and this forum 😊
We do - various of us are included in research programmes and advisory committees for research and drug development. We have gained our knowledge by walking the walk - and being on the receiving end of the experiences of thousands of patients. But it is all anecdotal and we are mere patients, not medics so all too often our experience is dismissed.
The charity has achieved a lot! I and other members of the charity have been involved in OMERACT - one of the few groups that gives equal weight to the opinion and experiences of patients as it does to that of healthcare professionals.
I started out with a pain in my neck. Then I noticed that I couldn't touch my toes. Very soon I couldn't kneel down without agony. After that I couldn't sit cross legged or squat and my shoulders joined in.
I am so sorry that you are suffering again. I am still afflicted and on steroids but can kneel down and sit with my legs tucked under for a while. Maybe you can sort this out with a relatively low dose if it does turn out to be PMR.
Perhaps you could persuade your doc to try you on a low dose of steroids after you’ve had the bloods done. If it is pmr & caught quickly you may not need much to get control.
This may or may not be of significance. My PMR became RA. Diagnosed with PMR 2017, prednisone for 2.5 years. I managed to wean off them as pain was almost minimal and side effects had been significant. 3 months later with the stiffness etc returning more blood tests and Doppler scans of wrists, showed bone erosion and inflammation, however my inflammation markers were normal and no RA factor. Diagnosis was seronegative RA. Stiffness is an understatement.
I also started in 2017 and came off pred Jan 2022 but still on MTX but only 10mg. By June some pain in hip to knee then shoulder joined in. I took 5mg pred for a couple of days and pain went away. Stopped MTX for two weeks to get Covid booster and much pain all over after ten days so another short burst of pred to fix that. People with RA take short courses of pred to deal with inflammation so I decided to try that too.Rheumy would rather I upped the MTX to 20 again than have to have regular short bursts of pred. I'm not convinced.
Frustrating when you finally get off the pred to have niggles return. I try panadol and iboprofen for a few days before resorting to pred.
My main symptoms of PMR were stiffness and pain in my legs and particularly my knees although I had been having hip problems (which were manageable) for a few months before that. The leg problems were completely intolerable. Shoulder stiffness and soreness, which was never that bad, came later.
Information about PMR rarely mentions problems below the hips and so I was quite surprised to receive a diagnosis of PMR.
"Information about PMR rarely mentions problems below the hips"
So people say - especially doctors. I'd love to see some of this information. All the stuff I am familiar with talks about hip girdle involvement which inevitably means the legs are involved. There are also studies and articles about the involvement of knees - and RS3PE being a factor in PMR and it often affects the feet and lower legs.
My PMR started with very stiff knees and hips. I've not had any stiffness above the hips. It took them a long time to diagnose properly because my blood test were inconclusive. The only reason for being diagnosed with PMR was because I responded well to Prednisolone. I am down to 2mg now. I can just about sit on my heels and I try to do kneeling and stretching exercises each day. My GPs doubted that it could be PMR because it was just the knees and hips. I wonder if PMR shows itself in the joints you use most?
Hmm interesting. I always always used to sit with my knees bent and feet tucked under me. My frozen shoulder is right arm I use most for gardening (not lately) painting and holding my camera. Thanks for reply
Interesting comment JA200: Iwonder if PMR shows itself in the joints you use most? as my PMR started in my knees (and right hip) after I had spent most of the last year kneeling to paint around the base of the house, then kneeling to paint all the skirting boards. It also affected my back, then spread to my neck and jaw along with a headache at the back of my head (diagnosed as GCA). Never at any time did it affect my shoulders.
Good morning Allsgrandso , PMR diagnosed 2015, no actual joint pain at all and responded v well to small doses of Pred but could never get off. Few years later would get achey wrists and ankles which improved with increased Pred to 3 or 4mg daily. 18months ago both knees joints became incredibly stiff and sore for first time ever along with shoulder and thigh muscles again. Long story but saw Rheumie and diagnosis changed to seronegative inflammatory arthritis with a polymyalgia onset and MTX added, took last Pred tablet in May, seven years since start. Knees are fine and hopefully everything else is too, fingers crossed. I still think I have more PMR than IA but who knows? Still on 15mg MTX once weekly. I hope you get sorted soon.
Like many who have replied to you I was told PMR affected only some parts of the body - what a joke! Thankfully this forum taught me that it can attack anywhere ( and interestingly it is my knees that are playing up at the moment.)
oh how I agree. I can't imagine how desperate I would feel without this support and understanding - and it's nice to be able to support others as well.
It will be interesting to see what the x-rays show. I wonder if the prednisone was concealing arthritis in your knees. Although I would not have thought that a very low dose of prednisone would help with arthritis in the knees. PMRPRO may very well be right about it being PMR rearing its ugly head.
My PMR started with my knees and shoulders. I thought it was due to exercise and gardening. It took weeks of worsening pain for me to admit that there might be a problem. I went to see th GP only when I could barely get up off a chair and walk due to my knee pain.
I was diagnosed in 2020. Before that my left knee was giving me a lot of problems. I had an MRI and they could not find anything really wrong with it. I had a steroid shot that made it feel better for a while. The pain came back three months later. The doctor suggested physical therapy and possibly a gel shot to cushion everything. Tried physical therapy but started to have pain in my hips. Went to my rhumy and he checked my inflammation levels, which were very high. He started me on prednisone and my pain went away.
Seems to be lots of knee stiffness as part of PMR here which is really interesting. Thanks for reply Plains. My inflammation markers were sky high five years ago. They have been low since, even when I was stiff and needed to upp the preds a bit so don't even know if anything will show in bloods now. Makes life easier if docs can see markers are high.
Yes it affects my knees too and my calves get very tight as well as my hamstrings. The consultant I saw today thought that my calf muscle stiffness might be due to long term (2 years) steroid use rather than PMR and wants me to try shifting medication. I got down to 4mg before a big Covid induced flare and currently back to 8mg.
In my case I know that my hamstrings, quads and calves get tight and then my knees get caught in the cross-fire. It has worked its way down from my hips and sometimes I can feel it in my lower back too. Before I was diagnosed (and on 15mg Pred) it started between my shoulder blades, then neck, shoulders, upper arms and occasionally wrists. Now mostly it is my legs that feel as though they have wooden sticks inserted
HI!My PMR started in my neck, then my arms and finally in both knees. The hips were never involved I'm pleased to say. The pred took care of the neck and arms but the knees were never the same.
I, too have been off pred since this August and have dealt with stiff knees on and off.
I did have them x-rayed and was told I have osteoarthritis in both.
Knee strengthening exercises and walking hopefully will prevent them from getting worse.
I find that Icy Hot in the blue capped spray bottle has helped a lot.
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