PMR in the knees!?

[Kaaswinkel72]

Kia Ora all, and thanks for being a community for us all.

I have been diagnosed with PMR from may 2017 been through the usual flares , last year on 3.5, now finally tapered, mostly successful, to 3 mg prednisone. Since about five weeks both knees have now started to be involved as well: swollen and because of that awkward/ painful.

I can manage it during the day but some nights one or two knees, and then the whole leg gets sore. I looked it up, being an ex medic, and thought it could be restless leg syndrome. ( I get up, move around, eat and drink something and go back to bed, pain less). I just wonder if any of you dear people recognise this symptom. ( academic.oup.com/rheumatolo... ) this is the link to the article, which I think is great!

[DorsetLady PMRGCAuk volunteer]

Sure other will be along to agree with you regarding legs - good article as you say.....

....just been “talking” to daughter on SI.....

so from UK - “po mārie”

[PMRpro Ambassador]

Given the article is 7 years old - how come so many doctors insist knees aren't part of PMR? Shows how much reading they do about it. It never ceases to amaze me either that Italy has some really good work on PMR - it really isn't a very common diagnosis here!

[SAM767]

Hi, I put up with stiffness for 6 months and put it down to some strenuous work I had been doing. I was taking pain killers for quite a while before eventually, whilst on holiday in Perth Australia, became almost immobile with stiffness through shoulders, neck, chest, back, hips and both knees (extremely painful), I had to be pushed out of bed and the usual scenario with help getting dressed etc etc. In Perth, a wonderful doctor immediately recognised symptoms of PMR, did my bloods and I saw a great rheumatologist within a week and started a course of Preds, starting at 20mg. There was an immediate improvement and within a week or so I was back to walking, cycling and my normal way of life. It has taken two years to eventually taper to zero preds with about 4 or 5 relapses at various stages. My knee pain was perhaps the most worrying aspect but thankfully I am, 'fingers crossed' almost free of pain, just a bit of residual shoulder pain which is not getting any worse and I hopefully will soon subside. I have been off preds for 7 weeks. So in my experience the knee pain was severe. Kind regards and good luck with your treatment.

[Kaaswinkel72 in reply to SAM767]

Thanks so much for your extensive reply, I was fascinated, although that might not be the correct word!So far I never saw a significant post regarding PMR in the knees. That is when mine “ appeared” I straight away looked it up and found the article I referred to.

I hope many of us especially the ambassadors will see it and recognised it as yet another bodypart PMR can stick its ugly head up.

Good to read you have recovered or are in remission, however we look at it. My knees are a little better by having gone back on 3.5 mg, which I have been on almost the whole of last year... not too worry, the pain in the shoulders now has diminished! Kind regards, and all the very best.

[Janetknit in reply to Kaaswinkel72]

So glad someone wrote about swollen, sore knees! My knees have always been involved in the journey of PMR. I was diagnosed with PMR last April, and have never been without extremely swollen knees. And yes it makes me also awkward and sore. I place warm corn sacks under them at night and it brings a lot of relief so I can sleep better. Hope you pain improves and that we all have a day of remission , and normal size less awkward knees in

our future.

future

[Kaaswinkel72 in reply to Janetknit]

Hi there, thanks so much for all the replies. I don t want to sound like a school teacher ...and...if you have time read, or glance over the article attached. The fact that you people had a similar experience makes it, strange to say, easier for me to accept..The warm packs under the knees possible also help because they slightly bend the knees, away from full extension, I will try that. I tried a full pillow but that was far too big! A self limiting condition he...well we wait and see. Look after yourselves😊

[gwenyth in reply to SAM767]

Your experience is very like mine 2.5 years ago. Because I already had a knee problem (torn meniscus and osteoarthritis) I just assumed it was getting worse and the other leg was deteriorating from favouring the worse one. Finally after several months when I couldn't raise my arms or get boots on and off or walk up and stairs I asked the GP and got a quick diagnosis of PMR - and pain and stiffness fixed overnight with Prednisone. Still on it at 8 mg and now getting over shingles too.

[Kaaswinkel72 in reply to gwenyth]

just been to my GP, the one that is by far the best in the health centre. Yes, I like her.No she had nt heard about PMR affecting the knees or met anybody mentioning this, so I gave her the link I provided us with re PMR and the knees. (2007!) Taking my bloodpressure 180 systolic, 185 when she repeated it...."They" really have not got the faintest idea how PMR effects us, how our systems get overstimulated, and that we don t seem to have the ability to put up filters to diminish the sensory overload. (I manage my BP fine if I take care of myself)

I felt as if I was living on a completely different planet (I probably am). Going to the "healthcentre"! great holistic experience. Does it surprise me?? no, does it make me angry, yes, in the way that I think of all those people that have to manage this condition by themselves and look for "support" at their "healthcentre" and what do they get pills for their inflammation but no understanding what so ever.

I just had to get this of my chest, in an hour or two I can shrugg my shoulders....