I started my PMR journey in about Oct 22. I was very quickly taken down to 10mg pred (after a bit of a sidestep to 7.5mg &9mg). However, I still ache slightly in my top left shoulder and groin. It alleviates a bit more in the afternoon once the pred kicks in. Should I be:
1) Upping my dose to more than 10mg, so I’m completely ache free before attempting to start trying to taper OR,
2) Just start trying to taper regardless OR,
3) Stay as I am at 10mg and wait for the magical no ache day before trying to taper?
Does anyone have any suggestions on the best way forward? Thanks.
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WhatNoCarbs
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I’ve been on the 10mg since Oct 22, so about 1.5yrs. The aches I mention have been consistently with me since the bulk of other aches left with me with the pred use. Some days are slightly worse than others, but I would say it’s at a fairly consistent level and has been for some time now
I’ll aim to put some more info up about myself in a free moment! Apologies.
I’ve not had any known fractures fortunately. My hip did ache for a couple of years before the PMR came about, so I do see it as a separate item.
You should note that my mother & aunt have also got osteoporosis, it’s just that they are a couple of decades older than me and there’s no history in my family with PMR.
This is now consistent over the past year. I have a sit down job, so nothing there. Loh & I often go on walks. Walks recently stopped for a bit as I have been found to be anaemic - seems to be just a vit deficiency. I will also have problems with vit K due to some long term meds. I have never taken a vit K2 supplement (just vit K1 in a multi-vit), but just this last week have started doing so - as well as the iron and osteoporosis meds too! Recently (start of March) went on a 2 wk hol - 10 to 12 miles every 2nd day. Am now trying to bring it up again after the anaemia diagnosis - managed about 2 miles yesterday, which I will aim to do daily for the osteoporosis. Not yet up to anything more at the moment.
You would be surprised - your head tends to be bent forwards and posture less than ideal. I can't remain sitting for long without support from strategically placed cushions. My old car had an amazing lumbar support built into the driver's seat - not in the passenger seat. I was fine for hours driving, half an hour in the passenger seat and I was struggling. The new car needs a cushion.
Have you had these pains since before pred? Have they always been similar? Are you right or lefthanded? Do you sleep on your left side?
They sound as if they could be bursitis - often part of PMR and sometimes it responds well to oral pred but it can take a lot longer than the muscle part to resolve. My muscle pain was gone in a few days, a lot of it in 6 hours, but the groin pain took 3 or 4 months to go altogether but you were messed about at the start and it might not have been got under control back then and has just persisted with use and PMR.
No the pains were with the PMR from what I recall. They have always been similar. I’m right handed and sleep on right side (have alway slept that way since childhood).
Not sure about the bursitis. I do sometimes, say stretch the left shoulder to say get items out of our under counter fridge or under my work desk to switch of the socket. Have been trying to not use the muscle so much in order for it to repair- in case it is damaged- but it has been like that for so long now. Similar thing for the groin muscle.
Have you ever had any physio for the shoulder/hip? Though whether the UK would do the passive stuff I'd get here as well I don't know. And imaging of some shape or form - ultrasound is particularly good for PMR problems.
Did you ever get any Xrays on your hip and shoulder to rule out Osteoarthritis?
I never got fully rid of right shoulder pain( am left handed) and mild groin pain when I started Pred in Jan 2022 but it was so static I decided to taper and I’m now on 3mg ( plus Methotrexate ) - I felt the shoulder pain was likely bursitis but it stayed up until end of 2023 so eventually went even while reducing Pred. The groin pain getting worse when tapering is my clue to ease off the taper though.
I had the usual DEXA bone scan at the start of the PMR (Dec 2022), which was meant to be used as a ‘ground point’ for later on for future scans, so my GP could tell if the pred had made my bones deteriorate. He and I were rather shocked to find I was well into the osteoporosis zone.
I do get a deep type ache with my hip, which my GP after looking at the DEXA scan asked if I got, so I attribute that to osteoporosis rather than osteoarthritis. Therefore, that could equally be true of other body parts, but I feel it is a different type of ache for osteoporosis to the PMR ache.
I ache with my spine occasionally, which I now attribute to osteoporosis (which has come back now that I’m not doing the long walks, from our holiday, and sitting down more).
I’ve got a call with my Dr on Thu so can mention it to him, but he’ll be keen for me to go down to less than 10mg regardless! (My loh said it was because I was always holding my phone in my left hand, whilst sending messages - perhaps, but that would not explain the groin muscle.) Thanks for your response, at least I know there is someone who has managed to reduce from that point, so is perhaps worth a try!!
What time do you take your Pred ? I only ask as you say it's the afternoon when it kicks in which makes me think it's mid to late morning.The other thing to try is to split your dose so 5 mg at say 8am and 5mg at say 9pm.
Some say this is not a good method but it works for me and it's worth trying
As you taper adjust each dose accordingly and taper slowly don't rush it
Splitting does work well for many - but once you are down to 10mg and below there is a downside to taking half as late as you are because there will be pred in the blood at midnight and that will suppress recovery of adrenal function. What can work better in that context is taking about 2/3 of the dose in the morning and the rest later enough to extend the antiinflammatory effect to 24 hours. Often taking the second dose at lunchtime is enough - and allows plenty of time for the blood level to fall again.
I think I’ll give that a go first, as I am concerned about reducing if I still ache in a few places. It may be that the 10mg was never quite enough for me of course!
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