Just read Rimmy’s post on similar topic. I would like your opinion on my current symptoms. Briefly, started on 15mg pred in December 2016 and have done recommended slow reduction until finally stopping October 2019 as I felt “ok” except for a slight shoulder pain on right side when turning over in bed which as it was only on one side I ignored. Since stopping taking pred I have been more active, walking further (11 miles along coastal path) and feel I am getting back to my old self EXCEPT my right shoulder is worse so I have been to osteopath 3 times but no real improvement and now my left shoulder is painful, trouble lifting arms to get dressed and rolling over in bed. I also get a very dizzy sensation sometimes when I get up or stop walking.
My PMR never showed up on blood tests so going to GP seems pointless. I understand it can take a year or more before the body gets back to “normal “ so am putting up with this at this time. I do not sleep well and often just crash out when I sit down in the day.
Your thoughts would be very welcome. After having had PMR, I do not wish to blame all my symptoms on PMR . Perhaps as I am now 3 years older (71) it’s just old age creeping up!
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Urtica
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If I were you I would try 1 or 2mg for a few days, then go back to 0.5mg. If the pains go then you have your answer.
In my four years on this forum the question of being down to zero, and then finding 0.5mg helps has come up quite a few times.
It seems counterintuitive doesn’t it, that a dose which is barely anything can make such a difference?
The three times I have had a flare have started off with one sided shoulder pain which I ignored for a while until it went to both shoulders.
Many of us at the beginning of PMR started off with one sided pain , which then morphed into bilateral.
So in conclusion, I think your PMR is still around, and that drip drip of inflammation has built up slowly so now you will be better off with a miniscule dose of prednisolone.
Thank you very much for your quick reply and advice. I think I was beginning to feel that I might have come off pred too soon but didn’t want to feel like a hypochondriac so will try 2mg for 3 days and see how I go.
I think you have overshot the dose you want, the PMR is still there - and there is a tiny bit of left-over inflammation which has mounted up until it is enough to cause symptoms. You wouldn't be the first to find that 1mg, even 0.5mg daily is enough to keep things at bay and in 2 or 3 months PMR reminds them it is still there, albeit at a very low level.
But I wouldn't "put up with it" - it is obviously increasing. Leave it long enough and 1mg and less may no longer be enough.
I would certainly try a low dose for a few days to see if it works. But at that low a dose and after even a couple of weeks you may well get away without a slow taper as there probably isn't much going on if you were OK before stopping.
Go to your GP. Quite often a Rotator Cuff happens with your shoulder and PMR.
You really need to get medical advice as soon as you can, procrastinating only makes it worse.
Rotator cuff impingement syndrome is a condition where your rotator cuff tendons are intermittently trapped and compressed during shoulder movements This causes injury to the shoulder tendons and bursa resulting in painful shoulder movements.
I do so hope I am wrong, but after years of listening and learning..........
Thanks for your reply. I have been 3 times privately to an Osteopath for my right shoulder but no better. We did discuss my using walking poles and carrying a light rucksack whilst walking the coastal path might have brought this on but he didn’t mention Rotator Cuff. I will try some pred to see if it works it’s magic and if not then explore your suggestion.
The 'arm lifting' issue and difficulty rolling over in bed are classic signs of PMR - so I also suspect you still 'have' it. Blood tests are not either always indicative and 3 years would be quite a short duration anyway. Careful you don't overdo things as well until you find out what is happening - you likely need to see a doctor - a 'good' one if you can find one !
I am also down to 0.5, and I do sometimes get an pain in my shoulder. I know I have a rotator cuff “shred” ( not a tear) and because the pain goes away, I assume it is not PMR. The PMR ache never ends
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