I've reduced carefully since 2018 on 15mg to 1mg pred since Jan 2023.
Since September 23, I've had increasing pain and stiffness in my intercostals but crucially in muscles in my hip area. At first it was annoying stiffness with a wee bit of pain for maybe 20 mins on waking and I could walk it off. After a month, it was worse and I started calling it a flare and went from 1mg to 2mg (having to dig into my emergency supply). I stayed on 2mg hoping it would improve with exercises from the physiotherapist (Rheumatologist referral - wanted me to improve my muscle strength) and some yoga and easy gym cycling. It's now so painful. The pain means I can't stand upsupported when I get up in the morning or after sitting for more than a few minutes during the day. I've upped the dosage to 4mg.
My question is how do you judge the amount of pain that is acceptable when you have PMR?
Stiffness we can cope with; half an hour every morning of pain, depressing but do-able; pain returning for a short time in the evening after watching tv - not too bad; but when pain is there whenever you stand or move?
Do we keep increasing the prednisolone until all the pain has gone?
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Not exactly, it's within. When I do the prescribed star reach squat exercise, it hurts mostly on the right side. I balance squat with my right foot pointing behind or at a diagonal, it also hurts, but less, on the left side (posterior-lateral position, spelling probably wrong, or behind).It only hurts on the right side when I'm not exercising.
One thing I am prone to now is piriformis tightness and jolly painful it can be too if I don’t get on top of it. They say it causes sciatic type pain down the leg, but I find that is a late sign with plenty of discomfort beforehand. The hip and buttock area is so complicated and tension in one bit can pull other bits and cause pain. I was at the osteopath only yesterday to sort my right hip/buttock out. Muscle weakness after a month long Covid recovery set off my usual muscular tweaks and it was affecting everything. If nothing else this link can show you that it’s quite a dog’s dinner down there and if you tweak a bit, it can be complex.
Sounds as if a couple of things going on… one you are too low for your PMR and probably have been for a few months - and I’d follow the protocol in link for dealing with a flare initially - and then back down to 4mg, as lower was obviously not enough…
..the hip pain is something else - bursitis, osteoarthritis? Have you tried painkillers? If so, do they help? If that pain is not caused by PMR, then Pred won’t help. Maybe request an X-ray.
Thanks, Dorset Lady, I should have tackled this earlier. The doctor agreed a 1 week increase to 2.5mg then back down to 1mg. Which didn't really help at all. I've tried paracetamol and ibuprofen to no effect. Now I've had a few days on 4mg and moaned to HU! But, I've had my best day so far this month.
Re read your article on flares - will take it on board. 😊 thanks again.
Sometimes a smaller increase can work.. but to do so you need to catch it quickly - the longer you leave a suspected flare and allow the inflammation to build up, the more Pred you need to get it back under control. Remember the old saying - ‘a stitch in time saves nine!’
But as I said, I wouldn’t return to 1mg for sure…. 2.5mg may be ample once under PMR back control.. and to be honest that’s a very low dose anyway.
My basic rule is that you shouldn't feel worse at the end of a taper than you did at the start. The level of pain relief you get with the starting dose is also a guide. The aim in PMR is to achieve remission of symptoms with medication and then maintain it.
It is the aim in other rheumatic disorders - why any doctor cannot see it should also be the case in PMR is beyond me. It isn't a special case that magically disappears after a specified time.
I'd suggest you have a myofascial pain problem - which could well be part of your PMR as they are linked and what you describe resonates with me. BUT I suspect this is due to a flare in disease activity - that does happen with PMR, UNLESS that 1mg was just a sliver too low and it took a long time for the inflammation to build up. But in that case - I'd expect the flare protocol to achieve something even if not perfection.
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