I have been on prednisolone since March 2019 and learned a lot about pmr from this forum.Currently on 7mg daily after using DL taper successfully since Jan '23 . See previous posts. Had an awful year, but now tapering 0.5mg successfully approx every 8 weeks. The last 3 tapers have gone really well.
I am pretty fit and active but about 4 weeks ago, when I reached week 4, I started to feel some muscle discomfort in the muscles (left arm, neck and collar bone area, right upper arm and hand.
I had been using with pruners etc so stopped the gardening and there was improvement. I decided it was muscle strain, as I have lost weight and muscle again in the last couple of months. Now I have some stiffness in left buttocks. Today I felt I had pulled a muscle in shoulder lifting a heavy cooking pot and neck stiff.
I have found that paracetamol is helping to ease these niggles and I am not in any pain. So my conclusion is DOMS and muscle strain. Obviously, I am not attempting the next drop.
I am seeing my physio tomorrow to work out if the exercises I do daily for spinal fractures could be part of repetitive exercise. I have been doing them for 18mths now with a huge improvement in posture and aches.
I would like any other opinion please. Am I being sensible. I don't want to rush into upping the pred if this is not a flare. I walk a lot, am always on the go and the only physical problem is some discomfort.
Appreciate all the time so many of you give to this forum.
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Sorry to hear about these "extra" aches and pains. Its important to know that one of the unfortunate effects of pred is it can cause muscle weakening. In light of that, your physiotherapist may give some advice about modifying, or possibly reducing the repetitions, of your exercise regimen. And you've just learned the hard way not to get too enthusiastic about unaccustomed exercise in house and garden! It is good that the pains were eased both by cutting back on the activity and by acetaminophen, a sign that extra pred is not necessary. However, if something seems to be lurking for a long time, and getting worse, perhaps starting to remind you about the bad old days before diagnosis, that would be a red flag regarding your taper. It seems like you have a good grasp of how to handle that taper, however, so trust your instincts.
I'd say what you are doing is a very reasonable approach. If you stick there and wait to see if things at least remain the same or (best scenario) improve you should be able to be fairly confident that it isn't a flare. You can never be 100% sure of course so caution is always called for.
But when you see the physio tomorrow, if it were me I would ask if the loss of weight and muscle is anything to be concerned about. Is it generalised weight loss without aiming to do so? If so, maybe mentioning it to the GP is a good idea - unintentional weight loss is always to be treted as a red flag. Just in case ...
Thank you DL, PMR pro and Heron NS. Most reassuring to read your responses as you are so experienced and have helped me sort my thoughts more than once.Re weight and muscle loss, I have had all this before from about June 2022. I am size 8 now from 12/14, but bmi OK. Dr arranged all sorts of tests and scans. Nothing amiss found except scan threw up the 5 compression fractures and after PMR enlightened me I had the zolendronic infusion privately a year ago, as NHS taking too long. I am now waiting for tel appt for second one on NHS! Some of the weight loss was probably due to decreased bone density.
Good to know I am on the right track. Many thanks.
Ditto to PMRpro’s comments - and maybe leave tapering for a while. Some enlightened Rheumies suggest no tapering during winter months… make sense really, bodies need to work harder in cold/wet conditions.
Thank you DL, PMR pro and Heron NS. Most reassuring to read your responses as you are so experienced and have helped me sort my thoughts more than once.Re weight and muscle loss, I have had all this before from about June 2022. I am size 8 now from 12/14, but bmi OK. Dr arranged all sorts of tests and scans. Nothing amiss found except scan threw up the 5 compression fractures and after PMR enlightened me I had the zolendronic infusion privately a year ago, as NHS taking too long. I am now waiting for tel appt for second one on NHS! Some of the weight loss was probably due to decreased bone density.
Good to know I am on the right track. Many thanks.
Leaving tapering for a while over winter seems a good idea. My body hates the cold, dark weather at the best of times. When I do start next taper, it might be a good idea to do each week twice. I don't know when that will be, as I would want to feel really well again before attempting it.
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