Interested in hearing from anyone who has knee involvement (intermittent pain and swelling) with PMR. Both my GP and an orthopedic surgeon thought it was unrelated, even though symptoms appeared at same time as more classic PMR pain and knee x-rays show no osteoarthritis. Prednisone seems less effective at controlling the knee pain, however.
Also, as I taper prednisone below 6 mg I experience increased pain starting 2-3 am, presumably when prednisone levels drop as I take it first thing in the morning. Should I assume it is due to prednisone withdrawal and wait a week to see if it resolves, or is it better to assume it is an incipient flare and jump back up a step or two in dosage?
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Hi, if you’ve tried to get below 6mg on more than one occasion with the same outcome, would say that, at the moment 6mg is the dose you u need. Won’t be forever, but is now.
Steroid withdrawal usually goes by day 4 or 5 on new dose and may be helped by ordinary painkillers; any longer than that as it’s too low a dose.
A bit more info might help - date started, starting dose, tapers etc.
In future might be with trying 0,5mg a time, and maybe a slow taper - this is just one version - healthunlocked.com/pmrgcauk...
But if you need 6mg, you need 6mg!
Knee pain could be myofascial pain syndrome if arthritis ruled out, but others will be along with more info.
Thanks DorsetLady,You asked for more detail... I started on prednisone mid-May of this year at 15mg (ESR dropped from 60 to12), then tapered quickly to 10mg . On doctor's recommendation I then dropped 1mg every 2 weeks (too fast!) and had a serious flare at 5mg (ESR=40). Went back to 8mg for a month, then tapered by 0.5mg every 10 days to 2 weeks and am now at 4.5mg. Recently I've alternated new low dose with previous higher dose for several days. Haven't had serious flares, and the night pains are tolerable (only present when I move) and go away shortly after I take the morning prednisone dose. Would you recommend sticking to each lowered dose for 4-5 days to see if the pain goes away altogether? And if not, jumping back up a notch or two?
On knees, I have no muscle tenderness so I don't think it's myofascial pain syndrome but any suggestions welcome. Thanks!
Yes stay at each new for at least week to see if steroid withdrawal (SW) - but that’s why the slower tapers were designed - to stop SW.
So in future maybe try then - the shortest one on the link I sent you takes 5 weeks, and I found once I’d complete one taper, I could go straight into into the next one with no issues.
If you think it’s not SW and too low a dose, which I would suspect it is , then usual recommendation is to take 5mg above your previous dose for a few days (5-7) and then drop back down to that dose or maybe just above it.
Whatever way you do it, you really need to get out of the yo-yoing of doses - it doesn't help your illness.
It’s like driving a car with your foot continually pressing the accelerator then the brake - you need a smother ride.
I started with GCA 4 years ago and after a flare or two got down to 1 mg of Prednisolone a year ago. A few months before being diagnosed with PMR I visited the dr with knee pain who was adamant it was arthritis had a n X-ray and they said it was arthritis. In the weeks after that my shoulders ached and thighs, I could not get out of the bath and went back to dr. After a blood test with raised levels back up to 15 mg yet again. During the last year have managed to get down to 3 mg have very stiff knees on waking up and getting out of chair but really don’t know whether mine is arthritis and haven’t seen the gp for a year.
Hi I remember getting a swollen painful knee and similar elbow, like tennis elbow, they came up almost overnight and disappeared quite quickly. I was newly diagnosed & not been on pred all that long. Never had it since, but it’s a bit different to your situation. Fingers crossed it goes away.
Thanks PMRPro,My night pain is in the neck, shoulders and upper arms, upper inner thighs - similar to when I was diagnosed but much much milder. Since I take the pred at breakfast, I can't say for sure whether the pain responds to movement or the pred. I generally feel quite normal from about 9-10 am until 2-3 am (except for the knees, which may or may not be related). Pre-treatment, the pain did diminish over the day but never went away. So I assumed the improvement is mostly due to the prednisone working.
It might help to take say 2/3 of your pred at breakfast and the rest later in the day - the antiinflammatory effect doesn't last the full 24 hours in some people and by splitting it it extends the effect.
My doctor said not to split the dose as taking it in the evening has more severe effects on the endocrine system. Of course this was the same doctor who thought I could taper at 1mg every 2 weeks. I've read other posts on this forum recommending a 2 am partial dose, but since I'd need to take it with food that seems kind of hard to maintain. If the night pain persists I may try taking just 1/2 mg with evening meal. Thanks again for the advice.
My specialist said he had never heard of PMR starting in the knee, but mine did and as I talk about it, three others in my small town also had knee problems first.
If I forget to take a dose of Pred and take it two or three hours later, the first to ache is my right knee then my shoulders. It's a pain I put up with as I have had worse.
I try and take meds at 8am each day.
Just being a few hours late on any particular day and then getting the aches tells me that I am on the edge of the pred dose I should be on.
As you will find here every single person has a different, I am a 68 y/o male and keeping as active as I can all day helps me sleep and cope.
Thanks for this reply LilyBark. And the link to the journal article. I have read that one, and also found many more studies showing that as many as one-third of PMR patients have some synovitis/capsulitis of the knee. I guess it doesn't always cause pain, and it doesn't seem to get included in the general info that GPs use to diagnose this disease. I was just wondering whether others had experienced this "on the ground" and whether I should to pursue other diagnoses or just be patient and wait for it to subside with the PMR over time. The pain and swelling comes and goes so it's hard to see a doctor when it is at its worst. I'm hoping this doesn't mean I'm more prone to GCA/LVV!
For almost a year I had a vey painful swollen left knee, x rays showed nothing, Doc thought it was a torn cartilage, however when the full blown PMR came along in the arms and shoulders the knee problem disappeared, hooray, although I didn't exactly feel much like cheering at the time. I am sure the two were related.I found that taking my pred later in the morning meant it would be afternoon before I got the full benefit, I now take it early morning, about 4am.
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