Was diagnosed with PMR in March 2024, after suffering much pain and stiffness particularly in upper arms and legs. I needed help to get out of bed and dressed. I was prescribed prednisolone 15 mgs which helped. Since then I have been trying to reduce the dose which I did down to 7.5. Unfortunately have had a flare up and now take 10 mgs of prednisolone which helps but still have pain and stiffness particularly in the mornings. I am normally a very active person even though I am 81. I find all this very depressing as at present I don't really appear to be making any real progress.
I have a Rheumatologist who only seems to be interested in reducing my prednisolone.
Can anyone give some advice please.
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Strausswaltz
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My first suggestion would be to find a doctor who understands PMR. because I suspect your current one doesn't!! Does your GP take any interest in your care other than prescribing the pred when required?
Can you tell us more details about how you had been tapering your dose of pred? It helps us to help you. That you flared at 7.5 and have returned to 10 suggests to me you may have been reducing in 2.5mg steps. Is that right or am I jumping to conclusions?
Don't worry - first of all, 10mg is not a HIGH dose, it is bordering low and moderate. High is above 20mg/day. The morning pain may suggest you are on too low a dose but it is also a normal part of PMR. The inflammatory substances that cause the inflammation underlying the symptoms are shed in the body in the early morning, about 4-4.30am, and then start to get to work again until you take your pred which then takes about an hour to have an effect. The symptoms are annoying but not a problem unless they are getting worse - suggesting the inflammation is building up further - or stopping you functioning.
When you started on 15mg, was the response good or only partial? Did you also reduce your activity or did you try to carry on as you would have done pre-PMR?
PMR isn't a short lived thing where you take a dose of pred, it sorts it all out and you reduce to get off the pred altogether. The pred has cured nothing, it is a management strategy, you took a high dose to "springclean" and clear out the accumulated inflammation, and now you are tapering slowly, a process called titration, to find the lowest effective dose, the lowest dose that gives just as good a result as the starting dose should have. In 95% of cases the patient DOES get off pred entirely but while it can take under 2 years for about a third, obviously that means it takes longer for most of us.
Once you get to 10mg, the taper should be slowed a lot - not more than 1mg a month, preferably every 4 to 8 weeks, and with care. Any signs of returning symptoms means you have gone too low - you go back to the last good dose.
How did you feel when you first started taking pred? Things should not get worse apart from you can get some grumbles after reduction for a couple of days or so.
maybe have a look at this to see if there his anything you could be doing to help yourself. But sounds as if you have a rheumy who is too gung ho in his tapering approach… and to be honest with a patient at 81 years he really shouldn’t be. QOL and controlling PMR should be paramount.
Link is a bit long - but do hang on to it and dip,in and out as necessary.
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