Swollen leg and knee pain

[Guilder]

I was diagnosed with PMR and GCA in June 2021, having had symptoms since about 2016. I hadn’t found this forum then so my pred tapering to 10mg from the original 60mg was according to the consultant’s advice. I got down to 5mg but am, on my GP’s advice, back to 8mg currently after I had a bad flare a couple of months ago.

I had my spring booster jab on 18th May and, like many I know, had quite a severe reaction for the first time. Four days after the jab I noticed that my right thigh was quite swollen -so much so that it can be seen under my jeans as a ridge,and I had pain in the back of my right knee. There was no pitting or heat and it was only mildly painful to touch the knee. The knee hurts most when I’m getting up or down from a chair.

I saw the GP two days after noticing the swelling and he suspected a DVT so booked me in for an ultrasound. I had that yesterday and there was no DVT so I’m seeing the GP again to investigate further. Has anyone had a similar condition? I don’t know if it could be something to do with PMR or if it’s a side effect of the Covid booster and, as my GP is in training, I’d like to have something to contribute to the discussion.

[tempusfugi]

Hi Guilder, first of all, let me say, I am sorry to hear about your knee problems and, secondly, I do sympathise because I have a similar thing going on. I may not be much help, I'm afraid, but thought I'd explain my thoughts anyway.

I have had knee problems, particularly at the back, since I started on Pred over two years ago (am on 10 mg at the moment, slowly reducing to 9.5). Like you, the pain is worse when getting up or down from a chair and it is particularly painful when climbing stairs and when I get out of bed. Also the pain is disruptinng my sleep nowadays, so I am all over the place with that. My right knee is swollen, too, the left one, less so.

I am due to have an x-ray on my right knee on Friday (a week today) so will see what that produces. Although I've had the pain on and off for over 2 years, it has not stopped me functioning though now, since getting worse, I am hoping to get some clarification from the medical profession on what's going on.

Just wanted to add that, if you look to the right of the screen, there are several posts (above the Moderation Team list) on this subject which may help you. Hopefully someone else may contribute to your post here. I'll be interested to hear how you get on with this problem. All the best, tempusfugi

[Guilder in reply to tempusfugi]

Thanks, Tempusfugi. My PMR has mainly affected my shoulders, arms and hands so far, which is why this new pain has confused me. It’s in the soft tissue behind and at the side of my right knee and mainly hurts when I get up or down from a chair, but it’s started aching at night and is disrupting my sleep. The swelling is above the knee and doesn’t seem to be affected by exercise or sitting with my feet up. The fact that you’ve had pain at the back of your knee reinforces my suspicion that it’s PMR related, so that gives me somewhere to start when I see the GP on Monday. Thanks for that!

[PMRpro Ambassador in reply to Guilder]

Could it be a Baker's cyst?

mayoclinic.org/diseases-con...

[tempusfugi in reply to PMRpro]

I'm not sure about a Baker's cyst. I have wondered about this but, although many of the symptons seem similar to those described on the Mayo Clinic link, there is no similarity to a cyst in shape or size.

A few years ago, I did have a torn cartilage in my right knee and some discussion with a physiotherapist about sinovial fluid. This has certainly worsened since I've been on Pred, so I feel a connection.

If it is a matter of fluid/Baker's cyst, would that show up on an x-ray or would an MRI scan be more useful, do you think?

[PMRpro Ambassador in reply to tempusfugi]

No idea to be honest!

[Guilder in reply to PMRpro]

I’ll let you know whether it works! If not it’s back to the drawing board.

[PMRpro Ambassador in reply to Guilder]

Yes, do. Hope something helps!!

[Pangolin43 in reply to tempusfugi]

Hello. I had a Bakers Cyst diagnosed by ultra sound 😀

[tempusfugi in reply to Pangolin43]

Hi Pangolin43, as a matter of interest, did your Bakers Cyst arrive after being diagnosed with PMR and taking Pred? Also:

were both knees affected?

was the Cyst typically round in shape?

what treatment did you have, if any?

Thanks vm,

Tempusfugi

[Pangolin43 in reply to tempusfugi]

hello again. My bakers cyst is behind my right knee. Apart from some swelling in both knees there is thankfully only one bakers cyst. It was diagnosed after PMR but I believe it was there before. I don’t receive any treatment for it. It’s sort of an oval shape. I think as I have reduced Prednisolone other problems have reared their head. Maybe they were masked by pred? I definitely have osteoarthritis and my right knee gives me a lot of intermittent pain which also radiates to my groin. The cyst has also got bigger. I’m booked in to see the muscular/skeletal clinic in early July. I hope this is helpful. 😀

[tempusfugi in reply to Pangolin43]

Thanks for your response, Pangolin43. Yes, very helpful, as is Mfaepink1973's response further down this post. Her (I think that's correct!), bio is V thorough and informative too, fyi.

A friend of mine who has bad osteoarthritis and also HAD PMR, told me that the steroids definitely masked her osteoarthritis pain. She is now off Pred (in less than 2 years - so I do wonder), and is in a great deal of pain, which she puts down to osteoarthritis.

Do hope you find the muscular/skeletal clinic useful in July. 😊

[PMRpro Ambassador in reply to tempusfugi]

Been told that PMR lasts 2 years and that anything there after 2 years is not PMR has she? I know where I'd put my money ...

[tempusfugi in reply to PMRpro]

PMRpro, I'm not sure my friend was told about 2 years (she has seen only 1 NHS Dr, I think, and he was a locum). The thing is, she was sooo keen to get of steroids that she reduced too quickly and flared. After trying again, she came off them, without any guidance as such. She's been in, what I consider to be, severe pain ever since but has put it all down to osteoarthritis and is coping somehow.

[Guilder in reply to PMRpro]

Thanks, PMRpro. I must apologise if you get this twice. Most of the replies I’ve written have disappeared when I’ve clicked ‘Reply’ and I’m waiting for help from the help centre. I’d not heard of a Baker’s cyst. I don’t have any swelling behind my knee, but several of the symptoms on the Mayo site are familiar, and it certainly hurts more if I stand for any length of time. I’ve found that Bowen Technique helps with the pain in my arms and shoulders so I think I’ll try another session for the swelling in my thigh, to see if it acts like a manual lymphatic drainage massage. My Bowen therapist uses acupressure as well as Bowen, so I might be lucky.

[tempusfugi in reply to Guilder]

Thanks, Guilder. I must say that your description sounds v similar to mine. PMR has, like yours, affected my shoulders, arms and hands. In fact, I've had both hands operated on for Carpal Tunnel Syndrome in the last 6 months. Also pain in the buttocks, at the start of PMR.

[Doraflora in reply to Guilder]

I was about to post the same question myself this evening, Guilder.

About three weeks ago my right leg (knee mainly) starting hurting and I notice it had swelled up. I immediately put it down to the exercise classes I’d done. However, I’m stumped as to whether I did in fact pull a ligament or whatever or, on reading these posts tonight, is it Pred related. Oddly enough this started just as I’d done a very slow taper from 3mg to 2.5

My knee is really swollen and it sometimes pings and sometimes I get it lower down in my leg. It hurts getting out of a chair & going upstairs.

I’m going to phone the surgery on Monday & hopefully get an appointment to see someone.

The bottom line is: since leaving our old surgery 2.5 years ago, since then at our new surgery I’ve never seen or spoken to any doctor about my PMR. Let alone ever been referred to a rheumy. They literally leave me to my own devices&just dish out whatever dosage I ask for!

I didn’t know whether to increase my Pred for a few days or not…

(Sorry for the long ramble as always, folks😂)

[Suffererc in reply to Doraflora]

Ihavethe same symptoms. I asked the GP if it could be caused by steroid use. I had my last dose of Pred February 1st 2024 after 6 years . He didn’t reply 😊

[Doraflora in reply to Suffererc]

They’re just GP’s after all, Suffererc. My old GP just sent me a link about PMR. They’re not specialists.

My old GP hardly knew a thing about haemochromotosis when she told me i was a carrier and to google it🙄

[tempusfugi]

Whoops! sorry, finger slipped! Certainly, the swelling is in the soft tissue behind the knee and I feel there is swelling at the side of the knee, too. I have a problem sleeping, particularly in the last few weeks, as the aching/pain wakes me up and I have to get up to relieve it. Haven't had a good night's sleep for an age, it seems😒

[Suffererc]

yes. I had a fall in December 23 and got up and walked away. Slight bruising. I took my last dose of Pred February 1st 2024. Shortly after I started getting pains in wrist and knees. Just put it down to the fall. End of April my left knee was becoming painful so I wore a knee support. The discomfort didn’t go away especially going up/down stairs. About two weeks ago the pain got worse. Yesterday I went to GP with pain in front of knee and in calf and behind knee. A positive DVT blood test. Sent for scan which showed nothing.

Today pain has been extreme. Waiting for call from GP. I presume they are going to review.

How strange your story came up today 😊

[Suffererc]

ps I must add - I have also recently been diagnosed with carpel tunnel. Having nerve conduction Sunday. I presume also from the fall 😊

[Guilder in reply to Suffererc]

My DVT blood test was border line positive, so the radiographer was very thorough scanning my leg from various directions but there was no DVT visible. She was very emphatic that it must be followed up by the GP, hence the speed of the appointment.

[Suffererc]

I haven’t heard from the GP. A receptionist rang yesterday to tell me to stop taking the blood thinner med. I had taken 3 tabs and that the report was being reviewed. Not heard anything since. PRMpro mentioned a BakersCyst and that sounds very probable. 😊

[Guilder in reply to Suffererc]

I hadn’t wanted to go on blood thinners, as my mother had some very bad nosebleeds on warfarin necessitating cauterisation, but, as the ultrasound took longer to arrange than expected,I was persuaded by the GP, who told me I could stop if no DVT was found. I stopped immediately, but the nurse manager rang to check officially.

[Suffererc in reply to Guilder]

I have just read the report from the Radiographer, who says probably a Bakers Cyst 😊

[tempusfugi in reply to Suffererc]

Good to hear that you might at least have a result, Suffererc, albeit a pain, literally. Hope you get on ok with the nerve conduction tests on Sunday.

[Suffererc in reply to tempusfugi]

😊

[Mfaepink1973]

I sympathise with you as I have had knee pain which has been pretty constant for over a year. I eventually went to the GP who referred me to hospital and they sent me for an MRI which showed torn meniscus cartilage in both knees. I’m having an arthroscopy on the left knee in August and hoping that helps. It’s worth asking GP to send you for an MRI which might show what’s causing your problem.

Good luck

[tempusfugi in reply to Mfaepink1973]

Thank you for this information, Mfaepink1973. Most useful, as is your updated Bio, which I've just checked out. I have an x-ray booked at a local hospital on 20 June, so will see what that produces. I was told I have a torn cartilage some years ago, so I'm thinking my right knee problem may be down to that, but I'm also wondering about a Bakers Cyst.

If I get nowhere with the x-ray, I shall ask for an MRI or at least referral to hospital. I have an appt with my rheumatologist in July, so I could talk to him about it, I guess. It's all so confusing and exhausting, I find, especially nowadays with the NHS being in meltdown. One has to push oneself all the time, even though not feeling well enough to do so.

Thank heavens for this more than helpful forum😍

[PMRpro Ambassador in reply to Mfaepink1973]

All I can say is - I'd be looking for a GP who has some idea about managing PMR, I think he probably caused a lot of your problems.

[tempusfugi in reply to PMRpro]

Sorry, PMRpro, who is your post replying to?

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

You can see above reply -there’s an arrow -like mine to you..

[tempusfugi in reply to DorsetLady]

Thanks DL. I just suddenly wasn't sure!