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.
Hi Strausswaltz. I was diagnosed in Jan 2023 & was put on 15mg Pred. I had a flare early last year when I had reached 7mg so went back up to 12mg . I stayed on that dose for two weeks & then started reducing but only by 1/2mg every 6 weeks. Since talking to my Rheumatologist I am now reducing by 1/2mg every 8 weeks following her advice. So far so good. It was very frustrating to have to back up to higher dose but slowly does it. I know your frustration, I am/was a very active 79 yr old but have had to recognise my limits. At least for now 🙂 Hope this helps. X
Many thanks for all your help and comments. I'm new to doing this sort of thing , a friend who has PMR recommended I joined your group.
Someone asked how I felt when I first took prednisolone. I took my first dose of 15mgs late afternoon and it was just like a miracle drug. At 10.30 pm I was able to walk up the stairs with very little pain. That was in March 2024. I started reducing during early summer at 0.5 mg at a time. Unfortunately I was having a very fast heart rate so it was necessary to take Bisoprolol Fumarate which I am still on but has sorted out the heart rate.
During late summer early autumn I have gradually been reducing again at 0.5 mg . My symptoms were not really as good as I would have liked though far more bearable than previously. Unfortunately the symptoms peaked again before Christmas and this is when the Rheumatologist put me back up to 10 mg. I have to see him mid February again and he is hoping that I can get down to 6 mg. by then. I can't see that happening. I am coping on the 10 mg.
I had an ultrasound scan in November on my shoulder and upper arm and was told that inflammation could be seen.
I have tried not to reduce my activity if at all possible though if I have a bad morning I have no option. I'm not sure should I rest (which I don't really want to do) or just keep going. I'm able to walk mainly ok but I really want to desperately get into the garden, but should I or shouldn't I? My husband and I were farming before our retirement and have been extremely active since.
I have re-read the advice that everyone has given me and am now wondering if I am trying to reduce (with the Rheumatologist recommendation) the prednisolone too quickly even though only by 0.5 mg.
Can I suggest that you copy this reply to your profile page under the Bio section? Then we can find it to look up your history if we need to. And maybe also post it as a new thread as only DorsetLady and I are likely to see it here so if you want answers to your questions from others it would be better reported.
You do need to reduce your activity to some extent - the pred cures nothing, just combats the inflamamtion and relieves the symptoms it causes. The actual illness is still rumbling along in the background and attacking your body and making you feel unwell and amking your muscles and joints delicate, as if you had flu. If you have flu, you are forced to modify your activity. This is no different.
If you repost this as I suggest, the gardening aficionados will talk to you about that, Me - Haven't gardened for years!!
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