I haven't been on site much of late as I've been pretty stable on 3 mg pred now for about 4 yrs plus. Never managed to get below successfully but finally I managed to do so at the Rhuematologists' suggestion and some alternative drugs he gave me to get me through any pain issues to see if I could do it. I managed on 2mg for 7 weeks after very very slow taper but on a walking holiday had the typical neck and shoulder pains I had at the beginning. So I tried upping to 3 mg for 4 days and back to 2mg thereafter. 2 weeks later I started having more pain and then my knees have become awful - like stiff and so painful.
I went to see the rheumatologist and he wants to put me on methotrexate which I know many of you are on. Some of my pains are typical PMR pains around neck, arms shoulders but the knees? ????
Has anyone else suffered in this area? Is it rheumatoid or PMR I wonder. I've gone to 3 mg but mild improvement so I'm going up to 4mg to see if that helps. Perhaps I need to go higher?
Supposed to be going on a walking holiday again next week but not sure it's worth going. It's clearly going to take time to get me on the methotrexate. Blood test not until next week and then I need a chest x ray etc. ( I've been taking pred for 7 yrs now and never been able to not take it but have lived really well doing 15 mile walks etc on 3 mg for years)
Any wisdom from others would be great. Thx so much.
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JudithWarrior
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Knees are definitely affected by PMR - see blue outline on picture…and before trying MTX I might be inclined to try and get the flare under better control myself…see this link for advice on that ..would say that 1 or 2mg increase not enough….
Personally, at the dose you are at he'd have some convincing to get ME to take methotrexate! Unless he can show me good evidence it might be an inflammatory arthritis which is a possibility of course. Otherwise there are no guarantees it will improve your PMR - it works brilliantly for a small number of patients but it is limited. But the only way to find out is to try and see if it suits you.
My PMR started with stiff shoulders and knee pain. According to one rheumy I saw I had OA in my knees, she could "feel it" - no imaging done. Thirteen years later imaging showed no sign of OA of any level!
Well I will have a blood test first to see what's happening. so hard to know what to do - you have to trust these guys at some point if you see them I guess and he said the side effects of MTX wouldn't be as bad long term as the 3 mg steroids. I asked him about the argument for staying on 3 mg if I can settle this " flare" if that's what it is, and accepting that's my lot for life. But he said given my age of 61 that wasn't sensible.
Haha - he can't guarantee that at all. I managed a month on MTX - the fatigue was overwhelming, I ached worse than I did with PMR and no pred, my hair fell out in chunks and I felt generally awful. The only thing I didn't have was nausea!!
If you don't have adverse effects and it works for you - good. But there are NO guarantees. You have to try it to find out. But even in RA where it is the first line treatment and prevents joint erosion in the long term, a study found that about a third of patients stop in the end because it doesn't work and another third stop because they can't take the side effects. That doesn't strike me as a wonder-drug with no adverse effects.
It is - and I did try to avoid it as long as possible but did agree in the end but with the codicil I would stop briefly for a foreign working trip to S Korea. After 4 weeks I felt awful - felt better after 3 weeks off and never went back on. But my rheumy was absolutely fine about it. More recently I offered to try leflunomide (which to be honest scared me far more than MTX) but he said no, straight to TCZ which he'd just used in a clinical trial in PMR and was confident would work. It is certainly preferable to MTX for me in terms of side effects!!!
Hi JudithWarrior , your story does have some similarities to mine. I was diagnosed with PMR in 2015 and did v well on tiny doses of pred until spring 2021 when l developed dreadfully stiff and painful knees (hips briefly joined in) along with very sore shoulders and thigh muscles which only responded to increase in Prednisolone. Long story but saw lovely Rheumatologist for first time and started MTX (15mg) last August along with slow reduction of 5mg of pred. My diagnosis has been changed to sero negative inflammatory arthritis with a polymyalgic onset and I took my last half mg of pred three months ago - feeling good. I’m not sure what I’ve got as had what l would think were classic PMR symptoms that responded to almost homeopathic doses of pred for years with only some aches in wrists and ankles until both my knees joined in - even then a single dose of 10 mg pred let me run upstairs again 3 hours later 🤷♀️ Absolutely no response to paracetamol, codeine or nsaids. Sorry no advice but mtx is working well for me at the moment, could never get off pred for any length of time, but have no idea what caused my knees to object after 5+ years.
Maybe a short burst of perhaps 10 mg pred then 7.5 mg and quickly back down to perhaps 5mg to allow you to go on holiday? That’s what my rheumatologist suggested and worked for me but we are all different and you need to follow your doctor’s advice. Hope you feel better soon, sorry not much help - all the best x
I was very against starting MTX as tiny doses of Pred had worked so well though never managed to get off. I had lots of imaging done of knees, hips and shoulder and no bone erosions seen. My rheumie said much the same as yours, being comparatively young ( 63 then) then I shouldn’t be on Pred forever if possible! To be fair I didn’t have problems with prednisolone to my knowledge and have been lucky that MTX hasn’t upset me (increased folic acid to 6x weekly as mouth was getting sore and some hair loss after 8 weeks- all ok after that) Also lost half a stone of belly fat in the month after finishing Pred in May (7 years almost to the day since starting on it) Normally takes me 6 weeks of hard abstinence to loose 3lbs. I still need to get rid of a stone of flab. I still think I have PMR rather than RA but atm MTX seems to work and I actually feel well again. I’m glad I tried it so far - my knees are absolutely fine! I’ve been on it a year, waiting for F2F appointment with rheumatology- initially said decrease dose of MTX if off Pred a year. I did notice achey shoulders after stopping it for a couple of weeks after Covid booster last winter. It’s so difficult to know what to do for the best but after so many years on Pred it was worth trying something different I think. I go on the nras hu forum now too and MTX does seem to work really well for some people- but not all!
PMR can affect the knees but so can osteoarthritis. What other drugs did your rheumatologist give you to get through the pain? As far as methotrexate is concerned, steroids are guaranteed to help PMR, Methotrexate is not!
It’s the Health Unlocked forum (similar to this one) but for rheumatoid arthritis /inflammatory arthritis. If you do end up on methotrexate it’s useful as obviously a lot more people have experience of using it on there, though not in perhaps the way it’s used for PMR as a steroid sparer.
Your journey sounds so like mine , exactly the same level of pred 3mg anything below it all falls apart , knee pain , back pain , not so much PMR type pains, I tried to stick with it and soldier on through it , but was miserable all the time , no quality of life . I’m on MTX now , only a low dose 7.5mg injection once a week . I came off it after 20 weeks thinking it wasn’t doing anything , 3 weeks off it I realised just how much it was helping me . I increased pred to 4.5mg to get stable again and am now slowly reducing the pred , I think when I get to 3 Mg of pred o might have to increase the MTX by 2.5mg increments to go lower , but the Rheumy said let’s just see how it goes this time . He said I my have to see an endocrinologist if this don’t work to get me off pred , last thing I wanted was to be dependant on 2 potentially toxic drugs , it’s a real juggling act . The Rheumy said although MTX is not a favoured drug with patients , for Rheumatoid conditions which mine is bending more towards , it gets good results if your body can cope with it , I actually know a guy that’s a high level triathlete and been taking it for 20 years. When on the drug they do monitor you really closely , Good luck hope you find what’s right for you 👍 , last thing injections are easy to do yourself and stop you getting nausea or the common upset stomach on this drug, I insisted on injection pen rather than orally.
Yes, I had a flare when I got Covid in April and my knees (and legs generally) have definitely suffered. I think what happens is that the muscles from the pelvic girdle get stiff and that hits the knees and pulls on the ligaments. In my case my calves also get very stiff so it is rather like having wooden legs. My osteopath has helped a lot but he is good with soft tissue work. A good sports masseur should probably help too, and stretches, gentle but long - 30 seconds plus. And well-balanced supportive shoes making sure you don't have any pronation (weak arches allowing your feet to lean in). Getting better gradually but I have had to go up to 10mg from 4mg and start tapering again
My PMR was worst in my knees. I couldn't bend them without agony - it took about 5 minutes to get into a kneeling or crouching position to unload the washing machine or put shopping in the fridge. My hips and back were next - bending at the waist was unbearable. It later spread to my neck and jaw (GCA diagnosed) but I never had any problems with my shoulders and arms. My knees, lower back and hips were Xrayed and MRIed, no arthritis was found (except some spondylitis in my lumbar spine), only inflammation. Pred was like a miracle cure. (I know it's not really!)
Thanks for sharing. It’s amazing hearing yours and others experiences that a seasoned Rheims can be baffled by the presence of pain in the knees due to PMR? Surely they’ve come across it before?
I think that's why I wasn't diagnosed straight away. Even the Versus Arthritis website doesn't mention knee pain versusarthritis.org/about-a... and states somewhere I read that shoulder pain must be present. However after a lot of research I eliminated all other conditions and suggested PMR to my GP. She agreed and put me on 15mg pred which worked like a miracle. However by then I had also developed a GCA headache and jaw claudication so she referred me to the local hospital and I was put up to 40mg pred. Now I'm just starting my first day on 7mg. So far so good, but I haven't seen my nice GP since then; I'm under a rather disinterested rheumy.
Well it is considered by BSR -"The Spectrum of GCA and PMR: revisiting the concept of the disease" dated 2016 - which is where the picture I attached earlier in thread comes from..
It is rarely mentioned in the literature (though it IS mentioned if you look in the right place) and many were taught it doesn't happen. It is difficult to disillusion some doctors of things they learnt at a particular stage of their education.
And of course - what do we know? We are only patients and live with it every day!!!!
Hi Judith - l have bad knees - long standing problem in both - my kneecaps used to subluxate as a child (ie dislocate but return to position) 😱 painful beyond imagination, then they used to swell like balloons.
I had both knees stabilised 1year apart when l was 16&17years old, the surgery was a great success except l’ve never been able to kneel! There is a pin exactly where l would kneel!
I had Chemo Seven years ago & it rather did a number on the backs of my kneecaps - hence l have Osteoarthritis n both knees.
I take MTX as a Steroid Sparer but it has no impact on my knees - l only wish it did 🙏🏼
You really could do with both knees x-raying to see what the problem is & then be prescribed the best treatment…..
Methotrexate can also take about 12 weeks to work. Me personally, I wouldn’t be going if I was in pain. I AM a lazy so and so though but have a proper think. X
Certainly! I felt that my knees were going to blow up. They were so painful I had to stop breathing when I straighten or bent my legs. I taper Pred and have been on 15 mg. MTX. No issues with the latter at all.
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