I started on 15mg of pred on Dec 30th, prescribed by my GP after three months of being told it was my age but getting gradually worse daily. I had a self funded rheumatologist appointment on Jan 2nd and he agreed it was PMR and said to taper to 12.5 after a month. My CRP/ ESR were 53 and 71.
On Jan 2nd I was asked how much better I felt and it was 60%. I took 2 doses of alendronic acid, as prescribed by my GP, but I have stopped as I felt worse. I am self funding a DEXA scan but no date for this yet. Further blood tests 6th Feb.
After19 days on 15mg of pred, my legs are less painful and the swelling has gone away. I am still having some problems in a morning climbing stairs, but nowhere near as bad as pre diagnosis. Two and a half hours after taking my pref I am stiff after sutting. I am back to walking every day outside without the need for a stick.
My upper arms, shoulders, neck and top of my back are still very weak and painful. My GP referred me for NHS physio and I wonder if the posture exercises I have been given to do are exacibating the pain. A full kettle is still too much to lift. Three dinner plates on a high shelf also too heavy to lift down.
Should I just carry on talking 15mg and taper as prescribed? Should I contact my GP in the hope of getting an appointment? I paid to see the the consultant myself , should I email his secretary for advice?
The rheumatologist did say that having looked back at years of blood tests, the differential diagnosis may be sero negative arthritis linked to Crohns disease which I've had for 52 years ( no current symptoms).
Any suggestions very gratefully recieved. Thanks.
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Eatsfruitsandleaves
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I would suggest that you actually needed to start on 20mg - 15mg is the bottom of the range for starting dose. And I would email the consultant's secretary.
After only 2 weeks I think it is fair to say that PMR is well in the frame on that result and it is very likely that physio is making things worse - it and PMR rarely mix well unless the physio is very clued up and the NHS ones tend not to be,
The 2015 Recommendations say the lowest effective dose in the range 12.5 to 25mg/day. You have an improvement on 15 - it would almost certainly be better and faster on 20mg.
PMRPro has already said exactly my thoughts on your post. I definitely needed 20 mgs for at least 6 weeks before I benefited from the full effect. Physiotherapy is not useful at this stage, you do not have a muscular skeletal disease, it can be useful during the recovery phase, way down the line. Activities need to be carefully paced at your stage and energy conserved like a miser and their gold. Please look at the tapering section of FAQs accessed on this page , this is key to the management of your disease. Avoid carbs as weight gain is very hard to avoid on Pred. In view of your history, I think you may be helped by a knowledgeable Rheumatologist. If you tell us which region you live in, we might be able to recommend someone. Good luck.
Thank you for your help. I did wonder if physio was probably not appropriate. I will phone to cancel my appointment and stop the exercises.I live in South Hampshire.
I would have been seeking a higher dose in your shoes.i was started at twenty mg, but after three days the GP increased me to a higher dose. I stayed on that higher dose for some three weeks till most of the inflammation was cleared up; then I tapered down, but as a rule never by more than ten per cent, and never if I could still feel pmr symptoms.
You will needs lots and lots of patience, but good luck.
On a side matter, well done for getting DEXA. They all want to hand out AA without a baseline. I had DEXA at private hospital you will be using - Southampton or Portsmouth. It was excellent service. It is the only one in the SW so no wonder queues.
Definitely not good idea to do repetitive exercise until PMR under control. Ouch! Gentle stretching should be fine. Gentle posture work like elongating neck or spine, while relaxing the muscles, not the sort of mindless exercises we tend to get from NHS (and some private) physio. Walking like you do is great.
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