Hello, I was tapering from a high dose of prednisone (suspected GCA) for 22 months now. Got down to 3.0 and crashed! I followed advice from all (going up to 7.5 for 5 days, then dropping down to 3.5). Tried that routine twice, actually.
My question is: my stiffness is in my knees, back of thighs. Knees are stiff weak in the morning, then by evening almost fine.
Is this PMR or something else? I’ve read PMR affects shoulders, hips, etc., not knees. Should I keep going up on prednisone? I’ve been walking (the dog) 30 minutes treadmill at low speedway) and doing small weights (not much) couple times a week
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Pamk1949
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I have had awful knee pain and swelling throughout my PMR journey of 3 yrs +. An X Ray showed Osteoarthritis. At present my ankles are giving me shooting pains coming downstairs. I think this is arthritis compounded by a much more sedentary lifestyle.
Thanks, SJ for sharing your experience. Your situation is exactly what I am suspecting. If it’s OA, and not PMR, then it doesn’t make sense to keep going up on prednisone, right?
I would seek a definitive diagnosis though, just to be sure. My PMR pain is unmistakable in my shoulders, arms and groin area. The knees feel different. If it is OA then your exercise regime should be helpful. I have successfully done Pilates with a Physiotherapist who is also experienced in PMR.
Hi pamk1949, weak upper legs and weakness and sore stiff knees was part of my PMR. Seperate from the bursitis I had in my knee or the OA in my right knee I have had for years. If you were at 30mg I might be more questioning of PMR but under 10mg...it leaves the question open. Have you had high inflammation markers with GCA? Perhaps worth a test if so. Perhaps its worth staying off the treadmill for a week and take painkillers to see if there's an improvement. It just that 7.5mg wouldn't be enough to tackle PMR I don't think. So perhaps others may have more specific advice if they too have had GCA that have gone into have PMR. It may be that a 15mg would be a test if Dr agrees.
Hello PoopaDoop, thanks for your reply. Yes, I actually had GCA and PMR and was up to 100 prednisone because of several amaurosis lasting several minutes. Tapering has been fine up till now, and am questioning if it is really PMR causing this stiffness. My rheumatologist is a plane ride away, so I’ll be seeing her soon. Had some blood tests locally, and ESR/CRP were fine.
I can wait it out, but was just wondering if waiting it out would be harmful for these knees, and also harmful for getting this disease going again. This tapering is harder than I thought—it all seems hit or miss. Thanks again!
If it's "just" OA or similar you should have a bit of relief from pain or soreness. The main problem with tapering is ensuring it's slow enough for no reaction from PMR/GCA and at lower does both those and no dalliance from adrenals. I have no problem with pred at such low doses (6mg for me for 10months now) so the slower the better. Hope you uncover the cause and that it doesn't involve pain!
I think I would do 2 things if possible: reduce the treadmill, it is an unnatural walking pattern, and up the pred dose a little bit. And get x-rays of your knees to rule out other causes.
I don't think it sounds like a flare but more your body catching up with the reduction. Were you better at 7.5mg? Maybe you should try 5mg and assess? But there are aches and pains associated with the return of adrenal function too and it is very difficult to distinguish between them all. One top PMR doctor likes to keep patients at 5mg for a few months and it really seems to make the rest of the taper easier.
Thanks! Good advice as usual. I suspect it might be adrenal also (feel foggy and sleepy as well). Staying at 5 for a while sounds reasonable too! Thanks again
While it may not sound like PMR, it could be indirectly related to weaker muscle and/or slight misalignment caused by PMR . Any change in the way your ankle /knee/hips are aligned will cause muscle tenderness and pain. They are all connected. I would find good PT and ask for help/assessment to start. It does not have to be yet another illness.
Yes, when I get this solved a PT would definitely help. Thanks for your reply!
There was nothing wrong with my knees until PMR, rhuemy took x-rays confirming this. Most of my PMR pains are knees ankles, wrists and hands. If my shoulders, jaw or hips start hurting I know I need to rest more and not ready to reduce further. Currently on 6, 14 months from DX.
Before PMR I had several x-rays, MRIs of the knees, hips, shoulders. They kept telling me I’m fine! But 2 years later maybe something has come up, so I’ll request those tests again. Thank for your reply, good luck with your tapering
My knees have been a problem for a year now. I’m 3 years into my PMR diagnosis. Started on 20mg pred.
Knees started to swell and became painful. Struggled to walk comfortably. Rheumatologist puzzled. Not usual in PMR. Have now had three steroid injections in left knee, one in right and fluid aspirated on each occasion. Gives me huge relief. Started leflunomide to see if it helps knee as we really don’t know what’s going on. X-rays show no signs of OA. Have tolerated new drug well so far but am complaining this week of uncomfortable knees - as if I’ve strained something. Feel a bit tight and a strange pain in back of left knee. Feel as if I’ve over done it but haven’t done much.
It’s this continual guessing that gets me down. Everything goes well for a few weeks and then wham bam! I try to walk regularly to keep some strength in my legs (used to be very active and finding loss of muscle tone and strength depressing) but this week I feel I should rest completely.
Currently on 8mg and rest of PMR pains in control, it’s just my left knee! I’m giving leflunomide together with hydroxychloroquine (started that in November 2018 hoping it would help knees) and prednisolone a go until next rheumy appointment in November and then reassess. Fingers crossed it starts to work otherwise not sure what we’ll do!
Hope your knees stabilise as I know just how debilitating and frustrating it is.
"Not usual in PMR" - sez he! I have heard so many PMR patients saying they have knee problems, I did - but the rheumy claimed it was OA. No it wasn't - no sign of OA at all after some 13 years!
I know there’s loads of us popping up here but to give my rheumatologist credit she does say it is not something she has seen much of. The question is how do we treat it? Increase the oral dose and taper more gradually once knees have stabilised or try the other drugs? My feelings are that I’ll give the other drugs I’ve started a go and then see what happens in November. If no real progress I need to consider my options. Stop the other drugs as they’re not working and increase dose of prednisolone. I’ve got my fingers and probably everything else crossed that things work out over coming months. Oh to be normal........whatever that is! 😁
The first thing is to have some imaging done to rule out other possibly causes. But bursitis is a component of PMR and that may be the cause of the problems. So treating it as housemaid's knee might be appropriate!
Think that is a problem for most of us, there is nothing definitive because nobody really knows and we all present differently.
It’s just very difficult when you’re going through a bad patch and another symptom appears - what do you do, who do you turn to?
Most of us muddle along and hope it’s just another phase, pop a few paracetamol (think I’m rattling inside with all the drugs I’m taking!) and keep everything crossed.
I know even if I tried my GP or my rheumatologist they wouldn’t have any clear answers that’s why this is such a tough condition to live with especially when you’re having a wobble.
Hi Pam
Jane is right, you really need an X-ray as it could well be OA Welcome to that Club too!
No putting up the Pref for the Knees is not the best idea there are other options, your GP may suggest rubbing in one of the gels or trying a simple pain killer to see if they improve.
The Stairs - is it worse going up or coming down? For me it’s coming down & l really can’t do hard marble or concrete steps 😩 l have to go the long way round!
Could it be weakened muscles caused by the PMR ? It was a shock to me when I read that PMR can actually destroy muscle fiber that does not come back. I am on 5mg of prednisone, 10 days, and trying to increase my walking endurance. I notice that my calf muscles no longer show the muscle definition when I flex my leg that they used to. I will continue to try to strengthen what I have left. To do this, in September, I hope to start a program at a local gym.
I've just spent 30 minutes trying to find the source, without success. I've done so much researching through medical papers since I have had this disease, that I just cannot remember where I read it. Sorry,
Didn't we just hear that from Dasgupta in something posted the other day? I don't know if it was the PMR or the pred. And apparently it's not really true as more recent research is showing.
You would be surprised how quickly you lose fitness and muscle size. I read once that within a very few weeks 80% of your fitness has gone. You need to rebuild the muscles and strength slowly increasing weight and reps weekly. As PMRpro has said..use old water bottles. Fill them a quarter or half full and increase the water as you get stronger. Don't do loads of repetitions straight off. As you are doing it stop if it starts to hurt or burn. Leave it a few hours then do some more. The more slowly you lift the bottles the better it is for muscle strength. If you do it fast gravity starts to do the work. It's slowly up and slowly down. 🏋️
I’m reading this as I awake with knee pain and a bakers cyst.
Last year I had a hip replacement because I developed “avascular neucrosis” which was a condition caused by taking prednisone for 2 years because of PMR. The blood supply to the hip was cut off and the hip died — causing the hip bone to wear down flat. In turn the hip put pressure on the knee and I am dealing with a bakers cyst of the knee. The doctors haven’t wanted to do much about it.
After much complaining — one doctor drained it a little on the top and gave me a hydrocortisone shot. it improved a little for about a week. But it is more swollen now and much more fluid and pain. Aging and weakness hasn’t helped. I’m going to try to see a doctor next week— maybe more draining and — and I’ll try to get PT. (I’m in the US). I have to get stronger!
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