Knee problem linked to PMR?: Until a week ago I had... - PMRGCAuk

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Knee problem linked to PMR?

Mikeysaab profile image
26 Replies

Until a week ago I had been doing quite well and had tapered down to 5mg with no pain in all the usual places. Recent dexscan was normal and I was feeling pretty optimistic. Then last Sunday my left knee started to play up eventually collapsing on me with quite a lot of pain. With some rest and plenty of icing this has stabilised and I can walk again although the knee is swollen behind the knee and it’s a bit stiff.

My dilemma is knowing if this is flare up and PMR related. I did have OA in the knee pre PMR and OA type pain. My rheumatologist when he first diagnosed me said that I would have a holiday from this while on steroids and I have- until now. However what’s just happened is nothing like the OA. It felt like a collapse of the soft tissues supporting the knee and was quite frightening. Planning to see the rheumatologist but I wondered if anyone on the forum has any insight and advice on treatment. I have raised the pred a bit since, thank you,

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Mikeysaab profile image
Mikeysaab
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26 Replies
SnazzyD profile image
SnazzyD

Did this come after any unusual activity or stress on the knee?

Mikeysaab profile image
Mikeysaab in reply to SnazzyD

Hi SnazzyD- no it didn’t . That’s what surprised me I had not been doing anything unusual.

jinasc profile image
jinasc

I developed Pseudo Gout (knee) after about 3 months on Pred. It was caused by the Calichew tablets (too muc Calcium).

I also have OA in both knees and I use Flexiseq - a biological cream developed by ARC, it works like WD40. It is expensive and not available on prescription. Worth trying?

Mikeysaab profile image
Mikeysaab in reply to jinasc

Thanks jinasc- does it work ?

jinasc profile image
jinasc in reply to Mikeysaab

Without it I would not be able to walk without pain.

One tube and follow the instructions is well worth trying..................when I first bought it it was about £19 as £3 went direct to Arc Research. It has since come down in price as more people are using it. A lady who had not been able to knit for 10 years and had problem with her knees also used it.

Because you have to sit for 10 minutes before you can wash your hands, she noticed within a couple of weeks, her OA in her fingers had releived the pain and got them working. That lady is now knitting again and for her first grandchild. I loved her 😊 when I met her at a meeting 3 months later.

As it is not a drug there is no harm in it at all.

Mikeysaab profile image
Mikeysaab in reply to jinasc

Wow- seen it on Amazon for about £15. Thanks!

PMRpro profile image
PMRproAmbassador

You can't blame everything on PMR - and like the person who had posted about back pain, I think an x-ray to have a look if there is anything structural going on is called for. If there isn't, all well and good and you know where you are. Swelling behind the knee should be clarified - ignoring it may mean you suffer for longer.

The treatment at present will be RICE - Rest, Ice, Compression and Elevation. But you do need to know if this is something where relieving the weight by using crutches would be a good move.

Mikeysaab profile image
Mikeysaab in reply to PMRpro

Thanks PMRpro - good advice . I need to know what’s actually going on with the knee.

PMRpro profile image
PMRproAmbassador in reply to Mikeysaab

You do!

Blearyeyed profile image
Blearyeyed in reply to Mikeysaab

Like everybody is saying there could be so many knee problems that it could be .

Get the lotions , use the Self Care but also get back to the GP and discuss it again , get an x-ray and see what's going on ,

Mikeysaab profile image
Mikeysaab in reply to Blearyeyed

Agree Blearyeyed

SheffieldJane profile image
SheffieldJane

This sounds like a Baker’s Cyst in its presentation and symptoms - very painful. Treatment centres on not allowing to get worse. The GP will diagnose and give advice on treatment.

Mikeysaab profile image
Mikeysaab in reply to SheffieldJane

Thanks SheffieldJane - yes been googling as you do and saw that so I think the result of whatever the problem is , caused inflammation swelling and possibly a bakers cyst .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Don’t rule out OA completely - my knee had a habit of feeling it was going to give way at times - whilst on Pred and after.

Rheumy is partially correct - you do get a rest from the AO pain at higher doses - but it’s still there, and maybe degenerating more than you realise because you aren’t getting pain.

That was my experience.

Mikeysaab profile image
Mikeysaab in reply to DorsetLady

Makes sense - there was definitely OA present before PMR

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Mikeysaab

Well...it will still be there...unfortunately!

Toes55 profile image
Toes55 in reply to DorsetLady

This was exactly my experience. July 2019 showed mild OA in right hip. Increased and different pain led to a PMR diagnosis in late August. In retrospect, I realize that I blamed PMR for a lot of my r leg and knee pain.

Hip arthritis often presents in the knee. Fast forward to January 2020....new X-ray of hip shows moderate to severe Osteo Arthritis of the hip! So, it can worsen a lot in just 5 or 6 months. The Orthopedic Surgeon says that I need a hip replacement, but I don’t medically qualify. So, dealing with a lot of pain.

Thanks to the “Flexiseq” suggestion above!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Toes55

Going to ask what might be a stupid question - but our medical system is different in UK to Canada.

When you say you don’t medically qualify - do you mean through your medical insurance?

So even though you need a replacement- you can’t have one? That’s awful- no wonder you’re in pain.?

nickm001 profile image
nickm001

Have a read at this link.. It may be connected to PMR but regular DR will not likely diagnose it as such.

academic.oup.com/rheumatolo...

I have been debating with my Orthopedic surgeon this a lot. Because of our age ( an in my case previous sport injury and surgery) he concluded it must be OA. Lots of Xrays but they will NOT show any soft tissue problems. Even MRI will not show problem unless there is a obvious damage / break in ligament or tendon structure. While he recommended TKR, I opted for more modest PT alternative.

For next appointment in April I plan to print this article for him and see if it changes his mind.

PMRpro profile image
PMRproAmbassador in reply to nickm001

Otherwise known as frozen knee it seems - who'd have thought! Wonder if they would recommend a shoulder replacement? Somehow I doubt it...

nickm001 profile image
nickm001

Not sure if it is language issue, but he relied more on medical imaging and ignore the symptoms I was describing, thus completely missing ( in my opinion) to properly diagnose the issue. I had acute pain and could hardly walk at the time, and was trying to explain that it is not the knee, but surrounding soft tissue that hurts. Since, thanks to rehabilitation, the pain is gone, although my knee is not strong enough to let me run. Luckily biking and swimming is not a problem.

PMRpro profile image
PMRproAmbassador in reply to nickm001

Seems strange to jump straight to TKR!

Whippetygirl profile image
Whippetygirl

Have you considered using a knee support it might help especially if it collapses suddenly.

Mikeysaab profile image
Mikeysaab in reply to Whippetygirl

Yes I do have one thanks Whippetygirl - need to use it more though !

Legsy0714 profile image
Legsy0714

There's a common condition, some kind of benign cyst behind the knee. Check out.dont know much about your pain and collapse but I think I read such a thing can be side effect of pred(or maybe statins?)

Hope you are back on track soon.

PMRpro profile image
PMRproAmbassador in reply to Legsy0714

Are you thinking of Baker's cyst?

mayoclinic.org/diseases-con...

It can be benign but can be mimicked by other less benign conditions so should always be checked out. It is due to inflammation - steroids are used to treat it.

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