Knee problems: A quick question. I developed what... - PMRGCAuk

PMRGCAuk

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Knee problems

Miserere profile image
26 Replies

A quick question. I developed what was diagnosed as knee bursitis in my left knee about the same time as PMR began to appear. I asked the dr if the two things could be connected but she said no as PMR only affects the hips and shoulders/neck. However, it is quite a coincidence and all this started last February. I couldn't walk at all for a couple of months and then very gradually built up to a mile only for the knee to swell up again and stop me doing anything. However, I am back on my feet after only a couple of weeks this time just around the house. I have been doing lots of leg strengthening exercises (non-weight bearing) and I have been using the exercise bike, gradually increasing the resistance. Today I went out for a short walk for the first time since Christmas. I probably walked about 1/4 mile and now I have the familiar tingling above the knee-cap which usually precedes swelling. I am not overweight although I am following a keto/PK diet to lose more. MRI said no bone/cartiledge/tendon damage - some arthritic changes but not, unhelpfully, whether they were slight or significant. As soon as arthritis is mentioned med professionals seem to switch off. I don't understand how arthritis can start so suddenly, in the same way my PMR did. Could it be related?

Thank you for reading - I am just at a loss how to progress further at the moment.

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Miserere profile image
Miserere
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26 Replies
PMRpro profile image
PMRproAmbassador

Many of us have had knee problems with PMR - and she may be interested in this study:

pubmed.ncbi.nlm.nih.gov/238....

which says

"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"

and frankly - if this guy, Cimmino, and his group in Genoa say it, I'll listen.

I'm fairly sure there are other studies looking at the involvement of extra-capsular structures in PMR and this article

jrheum.org/content/jrheum/4...

mentions posteromedial knee structures about 2/3 of the way down the first column on p2 - this defines the structures:

"The posteromedial corner of the knee includes 5 major components: the superficial medial collateral ligament (MCL), the deep MCL, the posterior oblique ligament, the oblique popliteal ligament, and the posterior horn of the medial meniscus."

All seems to suggest the knee can be involved ...

Miserere profile image
Miserere in reply toPMRpro

Thank you for your prompt response, PMRpro - I shall take a look at both documents.

Miserere profile image
Miserere in reply toPMRpro

Interesting articles - so clearly knee pain and weakness can be a part of PMR. It is quite restrictive and from walking every day with no problems to suddenly feeling so unable to get anywhere is frustrating. Fingers crossed it will clear as PMR improves.

Seacat30 profile image
Seacat30

I had awful knee pain when developing PMR and before diagnosis and it vanished first with the pred.

Miserere profile image
Miserere in reply toSeacat30

Thanks for responding Seacat30 - mine has not disappeared with Pred - doesn't seem to have made much difference. At least I know the knee can be involved in PMR and I just hope it will improve as I am able to reduce the pred and the inflammation.

Manihiki profile image
Manihiki

My Achilles’ tendons became inflamed and ruptured just as I got GCA and giant cell and one knee became sore and my rheumatologist diagnosed a baker’s cyst. Seemed too coincidental.

Thelmarina profile image
Thelmarina

I would add groin pain to PMR symptoms. I could hardly get out of the car! Vanished with Pred, alongside bilateral shoulder and hip issues. There’s always a lot to learn!

PMRpro profile image
PMRproAmbassador in reply toThelmarina

Groin pain in PMR is usually due to trochanteric bursitis - often part of PMR

Thelmarina profile image
Thelmarina in reply toPMRpro

Thanks. Helpful to know x

Miserere profile image
Miserere in reply toThelmarina

Oh, that sounds awful - something to be thankful that I haven't suffered. Glad the Pred made a difference.

Thelmarina profile image
Thelmarina in reply toMiserere

All good PMR fun 😱😀

Flivoless profile image
Flivoless

When I developed PMR along with shoulders and hips the backs of my knees were hell.

Miserere profile image
Miserere in reply toFlivoless

Have they improved with pred, Flivoless? Mine doesn't - that's what is so frustrating.

Flivoless profile image
Flivoless in reply toMiserere

Yes indeed. When I was started at 15mg, no effect, went to 25mg and all was well. I believe I have been lucky as I have not had any real pain since and I'm now down to 10mg.

Broseley profile image
Broseley

My knees were so stiff and painful I couldn't bend them in the morning without using my hands to pull each knee slowly towards my torso, one inch at a time. They were the worst affected part of me along with my hips. I had no problems with my arms and shoulders. PMR and GCA diagnosed due to high CRP and ESR. The pred got rid of all the pain and stiffness within 24 hours. X Ray of knees showed no arthritis.

Miserere profile image
Miserere in reply toBroseley

Glad to hear the pred got rid of all your pain as that must have been awful. For me the hips stiffened first followed by the shoulders - pred dealt with that very quickly, but not, sadly, the knee. Bursitis initially diagnosed and it comes up as soon as I try to walk more than 1/4 mile. I am badly missing the exercise and fresh air. The exercise bike and physio exercises are not at all the same, but the best I can do for the moment. I am now rigidly sticking to a low carb/high fat diet in the hope of shifting another stone which will take me down to the weight I was when we married.

Broseley profile image
Broseley in reply toMiserere

Good luck. I hope your knee problems are resolved soon.

Hoofprints profile image
Hoofprints

The more I read these posts, the more I question whether I have a sero-negative form of PMR.

In addition to long-standing hip and shoulder bursitis, I had an ultrasound scan last week that confirms knee bursitis. I can hardly stand or walk and am in massive amounts of pain not only on the knee joints, but travelling up my thighs.

The scan confired I also now have thickening of the fat layers above my knees on the front of my thighs (which the rheumatologist I saw at start of January claimed not to be able to feel). I have no idea what would cause this thickening - does anyone else have any ideas? It seems to be increasing in terms of the area of my leg it's covering and making it harder to walk.

And just for good measure, think I now have carpal tunnel syndrome- can see the swelling on my left wrist as well as the numbness and tingling in both wrists and hands.

All my bloods are normal of course!!

Miserere profile image
Miserere in reply toHoofprints

Hi Hoofprints - the bursitis in the knee sounds more like me. I am getting around the house and garden again now, but can't walk far. Standing is the worst thing as the knee just tightens and swells - it is so very limiting. It doesn't improve with pred whereas shoulders and hips did. I am not aware of excess fat in the layers above the knees but then I am doing a lot of leg exercises to try to strengthen the thigh muscles so that they can support the knee. I do get the pain travelling up the thigh - particularly the outside. I'd like to hear how you progress and if you come to any conclusions regarding your knees and I will report any as well. So debilitating, isn't it?

Hoofprints profile image
Hoofprints in reply toMiserere

It really is debilitating, and on top of all the other problems too.

I will certainly let you know if I get any answers. I have no idea when I will be reviewed in rheumatology again as I didn't even get to see the consultant this time, just his junior who sent me for a knee x-ray. The radiographer told me a plain x-,ray won't show up the soft tissue problems.

I hope you have a better and more interested rheumatologist? Good luck 🍀

PMRpro profile image
PMRproAmbassador in reply toHoofprints

I do wonder what it is makes them do plain x-rays - except possibly they think it reassures the patient that they are looking! I suppose it does rule out some things though ...

Just don't do an x-ray and tell me to touch my toes and THEN say there is nothing wrong with my back!!!!

Hoofprints profile image
Hoofprints in reply toPMRpro

I think you are right- but more to reassure themselves and the Trust that they have done something (cheap) to investigate in response to what the patient is reporting.

I have both elbows starting to swell now, very subtly as my knees started 18 months ago.

I really don't feel that they have either (a) got me on the right medication, or (b) got a complete diagnosis yet , which leaves open the possibility of both (b) & (c) applying 😭

Miserere profile image
Miserere in reply toHoofprints

They did an MRI on my knee - no damage to anything in the way of soft tissue, so ligaments, tendons and cartiledge all in place, but they noted arthritic changes. However, they didn't say whether these were mild, moderate or severe - I just wonder, when they go to the cost of putting patients through these expensive tests, they don't give more detail? The physio did remark that this wasn't really very helpful but at least we knew there was no problem with the other things. The mention of arthritis in any form, however, is when I have found that medical professionals just tend to switch off. I have not seen a rheumatologist - my diagnosis of PMR was done by my GP over the phone - the knee problem was treated as a separate issue and only diagnosed in A&E.

Hoofprints profile image
Hoofprints in reply toMiserere

That's amazing A&E did an MRI. It's absolutely the right test but even when I've presented with severe head pain (like the meningitis I suffered) I've only ever been given CT at most. So I doubt they would do that on my knees, even though I am in ridiculous pain.

At least you know what's not wrong, but as you say, it would be useful to know if you have osteoarthritis or rheumatoid arthritis etc. so you can get the right treatment.

Could your G.p. not send you to a rheumatologist now for an opinion?

Good luck- I hope you get answers and the right treatment soon 🍀🍀

Miserere profile image
Miserere in reply toHoofprints

I persuaded the GP to ask for an MRI - that's how I got one - not a referal from A&E. As my PMR is 'under control' as far as my GP is concerned I very much doubt she would refer to a rheumatologist now. I don't mind as long as it continues to be under control and I can slowly reduce steroids. I'll continue with the exercises and threaten it until it gives in.

Hoofprints profile image
Hoofprints in reply toMiserere

Yes but just watch how you go with the knees because if they don't improve with the exercise and current steroids, maybe you need looking at again 🌻

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