Ongoing knee pain

[Lochy]

I feel like I’m banging an old drum going on about my knee pain but I know many of you will understand. A lot of us seem to have one bit that niggles more than others.

I feel frustrated that despite having taken hydroxychloroquine for nearly a year and leflunomide for 7 months (4 months at 10mg and past three months at 20mg) trying to taper my prednisolone I don’t feel I’ve experienced any great improvement. My left knee continues to cause me problems. Perhaps not as swollen as before but still puffy and sore. Strange aches around my knee and sensations down my shin which can wake me at night almost like restless leg I imagine. Still tight coming down stairs and when I lie down and stretch leg out straight my knee aches for a while. It is affecting my walking which was one of the few things I could still do. I attempt yoga but have to be careful and I also do Pilates weekly in a fantastic gentle class which I really enjoy.

I’ve emailed my rheumatologist as not due to see her until mid November. Don’t really know how to treat my knee. I’m taking paracetamol daily and that helps. Is that the usual treatment for aching knee? I’ve had xrays last year and no signs of OA but should I request an MRI or other scan.

I’m just so frustrated and want to know how to move forward. I’m still tapering from 8 to 7.5 and rest of body still good (well it’s all relative!) hence reluctance to increase oral dose. Just have a suspicion all the drugs I’m on are not making any difference so why bother.

Any advice very welcome. Thanks

[jinasc]

Have they checked for Pseudo Gout?

I ran into problems with my knee, puffy and swollen.........luckily I was due to see my Rheumy and mentioned it to him............he took one look and said think it is pseudo gout...I had never heard of it..............he drained it and sent off fluid etc. Came back, I had excess clacium, no-one had checked if I needed that just in case 'calichew'. Dropped all 'just in cases and said, if I run into a problem, we deal with that problem.

You could ask the question and have a full spectrum blood test, which should take in all the usual stuff and all the minerals etc.

[Lochy in reply to jinasc]

I’ve heard of pseudo gout but not sure I’ve been tested for it. Have had fluid drained several times and 3 steroid injections in this knee. The fluid came back with xxxx inflammation but no sign of infection. Nothing else looked for I believe. I’m desperate to get to the bottom of the cause of the swelling.

[Hidden]

Is it hot to the touch lochy? Either way I would be icing it regularly. I had housemaids knee and it took ages to settle and was very painful, breaking through tramadol and paracetamol with codeine. If it is hot it may be an infection. Whatever it is it needs sorting. But I will say I did have to rest my knee apart from strolling round the house and recent tendonitis in my ankle has been ongoing for months. I got an ice doughnut online. It goes in the freezer then velcro round you knee.

[Lochy in reply to Hidden]

It can be hot to the touch at times. It is this morning. The fact it keeps recurring makes me wonder and I’ve no idea what super drug will deal with it considering all the drugs I’m already taking! It’s been ongoing for just over a year now and it was not one of my original symptoms. My legs were always pretty good and apart from a few niggles in the hips pre diagnosis. I do ice it from time to time. It’s a fine line between trying to keep some muscle strength and resting up........very frustrating.

I just wonder which speciality I try to see to get to the bottom of this??

[Hidden in reply to Lochy]

Orthopedic?

[teesher]

Hi Lochy, I had terrible knee pain then read on this forum about Flexiseq. Got it on Amazon, about twelve pounds a tube - not cheap but you don't need much and I found it a great help.

[Lochy in reply to teesher]

I’ve just got some flexiseq and have been using it. Strangely at night when I use it before bed I then have quite a few aches around my knee and through my leg. Doesn’t happen every night but don’t understand why?? Gets quite uncomfortable and then I take paracetamol. All very odd.

[PMRCanada]

I would advise requesting an MRI. When they did mine of both knees I was shocked at just how bad they were (OA in one, every type of meniscal tear between the both, and completely torn ACL that only has a few threads in tact).

My ortho surgeon noted a great difference between the two x-rays that were taken a year apart, and informed me I would need a total knee replacement in my right knee. The trick was then being patient while being on a two year wait list. Eventually I got transferred to another ortho surgeon about one hour away and am due to get the surgery in Feb of next year.

Good luck, and I hope you get to the bottom of your knee troubles. Some of your symptoms sound familiar, and I know first hand how difficult it is being in pain and having limited mobility (especially when I’ve been told to lose 20 more pounds before the surgery). I’ve had 3 steroid injections to address pain that usually work for about 10 weeks each time.

An MRI will reveal all!

[Lochy in reply to PMRCanada]

Thanks I remember your story. So frustrating. We do seem to have a similar experience so perhaps I will ask for an MRI. Don’t feel I can carry on like this so need to push again for some answers.

[Lochy in reply to PMRCanada]

Great surprise this morning, an appointment letter for a MRI in a couple of weeks. Obviously my email to my rheumatologist has paid off.

Will keep you all posted as to what they find. I do hope we find something that we can deal with! 🤞🤞

[PMRCanada in reply to Lochy]

Great!

[S4ndy]

MRI is what I would request from your doc. Both my knees have grade 4 arthritis. I am only 57 but have had very physical jobs throughout my life so PMR was not the cause of my knee pain. My orthopaedic surgeon did arthroscopy of right knee to make it more comfortable which helped a bit and I use volterol gel when it plays up. I have been offered steroid injections if I want for pain relief. My surgeon says I cannot have a knee replacement as my shoulders cannot cope with being in crutches. He says he would need to fix that first.

My rhemy prescribed Tapentadol slow release to control all my arthritic pain, I am riddled with it in my spine and shoulders.

On the upside the PMR pain has vanished and I am shortly going to reduce slowly from 5mg to 4mg.

Just written this to give example of non-pmr conditions occurring concurrently with PMR. Hope you get sorted x

[PMRCanada in reply to S4ndy]

Any chance you can use a walker while recovering from a knee replacement operation. This was discussed with me as an option instead of crutches as my shoulders “act up” at times with PMR and my GP suspects I have some rotator cuff issues. I know of a few folks, older than me (57), who have utilized this option.

[S4ndy]

I use a rollator anyway to get about but can't really do a lot of walking with it, I need to take breaks as my back starts to hurt very quickly. The shoulders still hurt too using this. It's a discussion I haven't had properly yet with my surgeon as he was not prepared to do anything while I was on the higher doses of steroids. I also think I would need to lose a considerable amount of weight before it would be wise to consider getting anything done if I wanted to give myself the best chance of recovery. It's both knees I would have to have replaced and unfortunately, the left knee has some numbness from nerve impingement from my spine.

The thing is what with my dodgy shoulders, deteriorating spine and ankles I am not sure if the benefit of new knees would be worth it in the long term. I don't think the NHS would fund me anyway. So maintenance is the way I am going for now xxx