It’s now seven weeks since my last steroid injection in my left knee. It lasted for about five weeks and now the pain has returned. Don’t think my knee actually reduced in size despite fluid being drained or perhaps it was marginal. Now my knee pain is referring down the front of my shin and round the back of my knee. Have had an MRI and an orthopaedic consultant friend told me the results showed nothing out of the ordinary for someone of my age and previous activity level. No signs of OA.Saw my rheumatologist two weeks ago and she still can’t understand why my knee continues to swell and cause such pain. She’s pushing me in the direction of methotrexate and I had a liver ultrasound to provide reassurance that my liver was ok (I have very changeable LFTs) Fortunately my liver is looking good! I’m still reluctant to try MTX but I don’t know what else to do. She says I don’t have RA. There appears to be a protocol to follow (in Edinburgh anyway) that I have to have failed two DMARDS before I can try other drugs (Biologics, I think)
I’m now very confused. Do I have PMR or is it some inflammatory condition of the knee? I just want the knee pain to go away. It’s causing me walking problems and the knock on effect of struggling to strengthen my leg muscles etc which should help. I do yoga and Pilates once a week and a bit of walking
Should I just give MTX a go? How does it work? Anything to take the pain away!
On a positive note I’ve managed to taper down to 8mg. As before the rest of my body is ok other than my knee.
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Lochy
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I don't see how mtx can work if it isn't an inflammatory arthritis. But who knows...
Most places have a protocol that you have to have "failed" two drugs lower down on the list before getting to try the expensive biologics except for certain defined diagnoses where there is less choice of effective medications,
I do wonder that myself but if there is inflammation presumably it has to be some sort of inflammatory arthritis. How can she be so definitive that I don’t have RA? Would my MRI have shown deterioration to confirm that diagnosis ? I’d have thought that inflammation would mean some sort of infection? I’m never offered antibiotics or anything to treat that. I’m still taking acyclovir due to recurring heroes outbreaks but there’s never any suggestion that anything viral could be causing my raised LFTs and my inflammation.
She can't be 100% sure it isn't - in the early stages of late onset RA you may not see erosin in the joints. There are other causes of inflammation besides infection.
I suppose if I try methotrexate and my knee improves that’s progress but it’s all a bit of a guess at the moment. At least nobody is pushing me to take it but they are recommending it especially as it will help my case if I try and fail.
What are the other causes of joint inflammation?
PS excuse the typos in last message - heroes should have read herpes!
Obviously this is a chronic issue you have, so only having had bursitis in both knees which were treated conservatively at home, I don't have much to offer except questions...forgive me if this info out there, I only had a quick skim of your profile and some posts.
Have you been allowing the knee time to recover from use that may make it worse?
Are you still playing squash???
Have you been going back to the old RICE formula?
I know you have had injections but did you have this problem prior to PMR?
Did the oral streroids ever help your knee?
Do you take nsaids? My OA pain and back pain do require a 3 day blast of nurofen plus to attack inflammation that other painkillers won't touch much (with zantac stylee support).
Again sorry if these are silly questions. The main question.... I presume that apart from hmmm and arrrr your Dr/rheuy/ortho are trying to come up with some sort of diagnosis and treatment plan? 🌻
No I have definitely retired from squash a few years before PMR struck. Was also a regular runner but that ended with the PMR diagnosis. My knee was never a problem in my previous life and in my first two years of PMR was absolutely fine. It’s only been the last 18 months that it has become increasingly inflamed and painful. I believe this is what they feel is ‘odd/unusual’ about me. The MRI isn’t showing anything unusual mechanically it shows effusion and inflammation.
I do try to rest my knee but it is painful on a daily basis even if I haven’t done any activity other than getting out of bed and coming downstairs! I have been icing and resting it when I’ve felt necessary which does offer some relief. I take paracetamol, which helps, and sometimes use deep heat or ibuprofen gel which isn’t that effective. I have been using a tuby grip on my knee occasionally which also helps a little.
The oddest thing is that my knee and leg can ache terribly when in bed and I sometimes feel some movement helps stretch things out.
I feel the oral steroids help but only at higher doses which because I feel well everywhere else I have been reluctant to increase my dose.
If someone could provide a magic answer as to why one knee swells I’d be thrilled. Is it down to a virus or infection? But my bloods don’t show raised infection markers. It’s only ever my LFTs that go mad
My GP doesn’t have a particular plan as he has passed me on to rheumatology and believes they are the experts! My rheumatologist wants me to try methotrexate. I’ve asked to be referred to a liver specialist beforehand. Doubt that will happen quickly so if I want the pain to go I perhaps just have to try methotrexate and see what happens. I just feel it might be a sledgehammer to crack a nut! I am currently taking hydroxychloroquine and leflunomide which are supposed to be reducing the inflammation but I believe are having little or no effect.
I suppose I want someone to offer me a magic drug that takes my knee pain away without worrying my LFTs!
I think I might have to be brave enough to stop these other drugs and just see what happens. Like many of us I’m worried in case I offend my rheumatologist etc.
I feel I don’t really have a plan of action. It’s just trial and error to see what drug may help. What else might it be if I’m told I don’t have RA (unsure how they can be so definitive), and I feel well other than a sore knee!
Apologies for a rather long winded reply but I do feel very stuck at the moment with nowhere to go. Not even sure what else I should be researching to help me.
My photo is of Lochy my gorgeous labradoodle which if I could I’d love to do nice long walks with as I used to.
Don't worry about the length of message, the detail might help someone who has had similar. I have had a dodgy right knee from a cycle accident 30yrs agao but my left knee was swollen last week and very painful. I did end up taking ibuprofen for a few days and it eased. It was like a sickly pain and happened late even towards night. I did all the right things. I then realised that because my back was bad I had been taking little rest laid across the bed or settee and the knee joints were oslightly overhanging and catching on the bed. I tried to alter my routine and it helped a bit. I also think the nurofen plus helped too. I think now my knee originated in my back and gets worse with rest. Both my ankles have swollen fro time to time toowhich I have accepted as pmr add ons. I am just going to educate myself on your other drugs a bit so will pop back. I presume pro or drs would have more idea but you never know!
My dog had a bad shoulder and elbow due to OA so we had 10days off doing the usual stuff... She got better I got worse! I had half a mind to pinch her metacam😁
Back... They are heavyweight drugs too aren't they! The leflunomide bumpf says it can be 6 months to start showing improvement, but you have gone past that and still knee bad (thinking aloud), but I suppose there is a chance its not one that suits you or you need more time. It stays in your system 1 to 3 years so if you did think of stopping it you need to a proper detox treatment.
I am on mycophenolate as steroid sparer and I know I have stopped it a couple of times for an infection and when I forgot my prescription. Both times it was around a week and despite it taking 6 to 8 weeks to build it up I was able to just take as usual once I got them. I mention it for that reason and for the reason I am not sure if it is helping me. The only thing that struck was possibility of back pain as a side effect. Sometimes referred pain can appear, but not sure if it would swell. I do hope you find a solution and that the rheumy decides whether you are one of the 30% of pmr'ers who may shown signs of RA instead or as well as. You must drive yourself nuts trying to magic it away!
Since pmr, as I have fibro and chronic back pain, if I have a pain or swelling that the dr (or me) basically tries to ignore and that is achey in the pmr areas.. Thighs etc. I do a test dose of plus 5mg pred. Have they suggested that? It usually calms after a day or two and then I come out of denial. I do hope it feels better and you get out with your lovely dog! 😁
Thanks for such a detailed reply Poopadoops. Any input and ideas help at the moment. I am driving myself nuts trying to deal with this and with such gaps between rheumatology appointments it’s very difficult to plan any change or different course of action. You do often feel like you’re self medicating!
It’s not been suggested that I increase my dose a bit to dampen it down. I think everyone is still obsessed with getting me off steroids, full stop. It’ll be four years in March! Typically as things do get bad I increase by a couple of mg and it helps a bit but the general feeling is I shouldn’t increase just for one knee! What the options are, who knows.
Coming in late - has anyone checked your calcium levels?
Just in case - I thought I would put this late entry into the discussion.
I developed 'pseudo gout' caused by too much calcium. I was automatically given Adcal when diagnosed with GCA and on 60mg, within 6 months pseudo gout.
I had been suffering from a while and left knee only.............it already had osteoarthritis prior to GCA and Pred, but was never swollen and so painful (I used Flexiseq and still do but now on both knees.
MY GP could not pinpoint the cause, but I had appt with my lovely Rheumy - bingo - one look, one needle to drain and then one blood test to check all minerals as well as the full spectrum test to confirm his suspicions, then no more Adcal. That was when I learned about taking 'just in cases' and stopped them all.
Hi jinasc, I’ve been told I don’t have pseudo gout as I did ask. Apparently it would have shown up on my MRI.
Funnily enough my liver ultrasound did detect kidney and gall bladder stones (small ones) no idea how long they’ve been there but I did wonder if my adcal might be responsible. Haven’t had calcium checked recently. Perhaps I should??
New one on me, my Rheumy poked, took one look and that was it. Maybe he just made a good guess. 🤔
I would insist on it..................I ended up 6 years down the line with Gall stones all due to calcium grit finally coalescing. And whilst they are checking for calcium, ask them to include all minerals, ie magnessium etc.
"Magnetic resonance imaging (MRI) – MRI is relatively insensitive for the visualization of articular calcium crystals and has no role in the diagnosis of pseudogout."
Oh dear! Where does that leave me? It was quite a complicated article to understand. If I’m correct it suggests pseudo gout lasts for a period and isn’t a permanent pain. Should I be asking my GP for more detailed blood tests? I’m unlikely to see rheumatologist for several months so what do I do now??
It leaves you with the claim it would have shown on the MRI is false. An aspiration and examination of the fluid in the knee is needed looking for crystals and white cell counts. The article is for medics and I only used it to show MRI is not helpful - this may be easier to understand:
Had fluid aspirated at beginning of this year and I was told results showed xxxx inflammation, no infection. Unsure whether that means no pseudo gout or it wasn’t tested for?
Would taking adcal cause the calcium build up and aggravate pseudo gout?
Sounds as if pseudo gout is intermittent but I have constant swelling, heat and pain.
That sounds as if the white cell count was high but there were no bacteria found. But they have to look for the crystals - if you don't look, you don't find!
In jinasc's case it probably was the calcium supplement and she stopped them.
I dared not say it out loud as I used my search engine to confirm what I had understood, found zilch................possibly because I did not put in anything to make it work.
So sorry to hear of you knee pain. What a misery. I have taken methotrexate 3 different times and The one thing about it is, it can take up to 3 months before you see any changes. My knee flares a lot for no apparent reason. I use a really good cbd oil cream(no thc) and rub it all over my knee and surrounding area everyday and I feel it helps a lot. I have had a lot less flares.
I do find it frustrating that we have to try methotrexate before anything else is considered and yet it doesn’t necessarily reduce any inflammation where needed eg my knee! Many talk of the side effects being hard. It’s like I have no other option yet it may well be pseudo gout which has been dismissed.
Either I suffer in silence or start nagging my GP again. Think he sighs every time he sees me but he agrees there’s never a dull moment in my appointments 😂
It's not got the chemicals that give you a high. I used to use dog oil to give my injured knee a massage. There is a school of thought that any massaging helps rather than the product. I always pushed the fluid towards the lymph lands in the groin as its "supposed to drain off". I got a donut shaped gel filled thing that you keep in the freezer and it has elastic and vecros to hold it on. I think I can put in hot water too but can't swear to it. I have a plastic box fill. Of things for injuries but of course I can't find the knee brace that always worked. 😕
Sorry to hear of your reoccurring knee pain. I get how debilitating that can be.
When my PMR first began 2 years ago it started in both my knees, quads and hamstrings. This threw off my GP for a bit as he ordered xrays, and later and MRI which revealed a host of problems (every type of meniscal tear, a section with no cartilage, completely torn ACL and the beginnings of OA. Before that I had no pain with my knees (despite being overweight and sustaining a ski injury), but 6 months of unchecked inflammation in my knees made the pre-existing issues worse.
Once diagnosed with PMR and starting pred, along with steroid injections I started getting relief (about 9 weeks after injection first 2 times). After a year of seeing an ortho surgeon who put me on a 2 year wait list for a total knee replacement, I was still having the exact same pain you describe (down the front of the shin and wrapping behind the knee), in the weeks between Medrol injections. Finally I complained about the long wait time for surgery, and I was referred to another ortho surgeon who had a shorter wait time for surgery.
When I met with him he looked at my most recent X-rays and said my knee didn’t look that bad, but that he would do it. He knew about PMR, pred (and increased rate of infection), and said we would have no idea what dose I’d be on by the time surgery came around. He did say although I may not be able to control/foresee my pred dose, I could work towards losing an additional 15 pounds before the surgery (i had already lost 30).
Well fast forward one more injection Sept 6 this year, and a very active summer (for me), and by now the effects should have worn off (usually they only lasted 9 weeks, not the 12 sited). I don’t have any knee pain at all?? Only a bit on the sides of my “better” knee. I don’t know if it’s due to losing weight, increased physical activity, or my 9.5mg daily dose of pred is masking something. A total mystery.
Ironically, it is problems with my right foot that is now causing immobility. I’ve been limping around the second half of the day with pain on the outside/top of my foot which gets worse with activity. My GP has taken two x-rays, a CT scan and nothing bone related is showing up. Next steps are to get an MRI and see a Chiropodist as he thinks it may be peroneal tendonopathy.
So you see, sometimes the medical community don’t find out what’s really the cause of the pain, and that can be very frustrating. Sometimes the pain disappears for no apparent reason (in my case I’m still thinking my knee will eventually require attention). And sometimes you just get one thing settled and others emerge (sigh). I tip my hat to all the folks who juggle multiple health issues.
I do hope you get to the bottom of your knee pain. Glad to hear your pred dose reduction is going well. Keep us updated with any results/updates.
Thanks for your detailed story, I do remember your knee issues from previous posts. Sorry for delay in replying but it’s been a busy week.
You’re correct that the medical community struggle for answers. My doctors have no idea what’s causing my knee problems. The MRI hasn’t thrown up very much. Saw my physio the other day and she agrees that my knee is stable and ligaments in tact and MRI reflects the swelling and inflammation but that’s about all. I wouldn’t be a candidate for any orthopaedic referral. She’s given me exercises and I’m going to continue with compression and icing etc. Very fortunately I don’t have a weight issue so that can’t be used against me!
Strangely enough my knee feels different this week. Still not right but pain has changed. More uncomfortable in bed or sitting with feet up. It improves with moving around. Still bit swollen. As you say things keep changing and have no idea why. Bit like my whole PMR journey.
I’m continuing to resist methotrexate until I’ve seen liver specialist. I feel I’m being pushed in that direction because of protocol. I feel well otherwise and am about to start my taper to 7.5 tomorrow.
I just hope my knee calms of it’s own accord. If I can continue to taper successfully and it’s only my knee that continues to misbehave presumably it’s not PMR causing my knee problem? And there shouldn’t be any panic about pushing me towards methotrexate.
Will see my GP in a few weeks so fingers crossed I’ve continued to improve.
Have no idea if this can help at all!! But here goes !
Dx PMR Oct 18. Now just reduced to 13 after a flare when went to 15 - roughly 1 per month. My ‘knee’ pain is a problem, although I don’t think it is primarily the knee. Bilateral pain and stiffness just below knees, down side of legs, and shin. Swollen right knee. Walk when outside with Nordic poles and use mobility scooter for longer distances. Pain bad!! Neuropathy in both feet which has developed over many years. Not diabetic. Have gained 2st since Pred. Carb control ‘pathetic’!
My gait over many years resulted in using orthotics, which I have found necessary. I had arthritis in the ‘Taylor navicular’ joint in my right foot a few years back which required surgery
Since PMR and the resulting stiffness and weight gain, my posture is not good, especially round my midriff. There is a tendency to bend forward although I try to correct this
I feel sure that the pains in using my legs are mainly caused by the poor posture and poor condition of all my muscles, producing a ‘knock on’ effect where my quads attach to my shins. In other words, my ‘elastics’ don’t stretch in the right way!! I can only go up or down steps one at a time and my ‘leg muscles’ are anything but reliable!
What I see as a solution - loss of weight, exercise, stronger muscles , better posture with the correct muscles doing their allotted job and the end ofPMR - doesn’t seem too achievable at the moment!!!
However onward and upward!
Sorry this rambles a bit and is a bit boring - but might put another perspective on ‘knees’!
Good luck!
Just found out how to ‘edit’! Forgot to say I’m female, age 77!!
I do agree that my surrounding muscles definitely don’t have the strength and elasticity they used to. But I did used to have very strong (some might say powerful thighs!) legs from all my exercise. I’ve continued with Pilates and yoga but had to give up running.
I’ve not put on much weight at all, it’s been more of a redistribution round my middle. My face has slimmed down recently since I’ve reduced below 10mg.
I’m off to yoga this morning and then to see my physio so will see what she says about my knee, although I doubt there will be any magical solutions at the moment.
I really feel there is something causing knee inflammation and whether it is infection/viral I don’t know but why is it one joint.
Thanks for your input and good luck with the carb cutting. It is so tough trying to change diet habits when you’re not very agile or mobile!
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