I have just completed a 2 year steroid course at the end of February , and whilst the pain has not returned to the original areas, I now have carpal tunnel like symptoms, pain , stiffness and burning in both hands, together with knee pain.
Does anyone have any answers of what to expect when off the steroids , I have so far resisted going back onto a low dose as awaiting a telephone consult with doctor in mid May, but as this doesn’t seem to be improving , feel I may have to restart albeit reluctantly .
Comments appreciated.
Written by
BadStanley
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PMR is rarely successfully treated with a "2 year course of pred" - PMR lasts as long as it lasts and that can be anything from a year to over 10 years, sometimes for life though that is fairly rare mercifully.
This is a recent publication which illustrates how management of PMR should work:
You are aiming to achieve drug-induced remission of the symptoms and then adjust the dose to find the lowest effective dose, the lowest dose that achieves lasting relief of the symptoms comparable to that achieved with the starting dose.
At the end of the tapering of the dose, once you are below about 4 or 5mg. the tapering process should be slower, remaining on each dose for longer to be sure it is still enough, That also helps the adrenal function to return as the pred dose reduces slowly and the adrenals top up the pred to the level of steroid the body requires to function well.
1mg can be plenty to keep the daily amount of inflammation created by a very low disease activity under control but zero pred just allows the inflammation to build up slowly, like a dripping tap fills a bucket sooner or later, and eventually there is enough to cause symptoms. Some people even manage fine with 1/2mg!
It can take about a year or so to get back to normal after taking steroids. The trouble is while we are on steroids they can blot out pain of other things such as osteo arthritis etc. Good luck with your doctor.
Sorry as you’ve found out, it doesn’t work like that for many people -hopefully a very small dose will get things back under control.
But this time around listen to your body rather than be controlled by the calendar and a doctor who has fixed taper in mind. PMR doesn’t read the manual. 🤔
Hi BS, I think the thought of ending a two year course is fairly irrelevant, much as others would have us believe. The disease/inflammation will disappear/stop when it is ready and not according to a time scale from us mere mortals. If you feel totally pain free and away from all your PMR symptoms then you may be one of the lucky ones and made it in two years, but it doesn't sound if that is the case. It's probably/may be worth going back to 2mg to see if the present symptoms are mitigated and then dropping down to where things are totally under control again. It's also possible that your present symptoms are being caused by something other than PMR in which case going back up may have no effect. My CTS tends to come back when I get below 5mg but, providing I reduce slowly no more than 0.5mg at a time and with wrist supports at night is under acceptable control. Neither I or my doc is pushing for surgery. Good luck and hope all goes well.
As Bcol mentioned it's possible your symptoms are indeed related to still active PMR. A couple of years ago I was having terrible pain in shoulders and physio wasn't helping as I expected it to (thought it was osteoarthritis). Only when one day I realized it was awfully reminiscent of pre-diagnosis days with PMR did I take an increased dose of pred (I'd been at about 1 or 2 at the time). I took 10 mg, and over the course of a couple of days the pain all disappeared, and although it's now a good 16 months or so ago has not returned and I've very slowly tapered back down to about 1.5. It was indeed PMR all along. So, yes, worth a couple of days at a reasonably low dose of pred to see it it helps. I didn't have to stay at 10 for long, but it did take a while before reliably below 7 or 8, and after that tapering became easier, obviously as PMR activity for whatever reason decided to let up again. It can be a very annoying disease and I for one am thankful we have pred to help us, although one's feelings can be rather ambivalent!
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