Hi there, I’ve been on pred for around 7 years now for PMR. I’ve managed to get down to 1.5mg a couple of times but I’m struggling with shoulder and back pain again. I wasn’t sure if it was due to PMR or the way I lie in bed but it’s not going away after trying all kinds of things so I’m thinking it probably is PMR related. I seem to be able to get to 2mg okay but whenever I lower to 1.5 the pains return slowly. I haven’t had any tests other than a bone scan since starting pred but I’m seeing a doctor on Friday and wondered if I should request tests and if so what kind.
Many thanks, Sue.
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Suzan62
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Haven seen a rheumatologist since my diagnosis. He gave me a tapering plan but it wasn’t as simplistic as it seemed. Thankfully I found this site as the advice I’ve received has been very helpful.
You are never reducing relentlessly aiming for zero come what may. You are tapering the dose to identify the lowest effective dose that gives the same relief as the starting dose did. You find it by tapering until you get to a dose where the symptoms return 0 and go back to the previous dose. When that happens more than once at a similar dose - that is the sign you have arrived. I would say you have got there: 2mg. It is a really low dose, almost no adverse effects associated with it and you would be fine to remain there longterm. Prof Dasgupta, a top GCA expert, told us during a seminar during Covid that he often keeps patients ar 2-3mg longterm as it reduces the risk of relapses. Here in mainland Europe it is quite common for PMR patients to remain on such low doses for years - my own rheumy told me that and he is probably the top expert in PMR in the world.
Whatever some doctors will try to tell you, PMR doesn't last 2 years and poof, it is gone. In a very early study, 40% of patients were still on low doses of pred after 4 years. But that is probably also the study that gave people the idea it lasts 2 years as they say:
"Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. The data support the concept of two patient populations--one with limited disease and another requiring long-term therapy"
You are on a dose that is safe - there is no reason whatsoever to introduce another drug or be concerned at not being off pred, it is very common.
Thank you, that’s very reassuring to hear. I thought I might need tests as I’ve heard various ones mentioned but I wasn’t sure. I’ll go back up to 2mg and hopefully the aches will subside again. Many thanks.
Oh right ok. I will definitely try that if this doesn’t work. I was thinking of increasing a bit higher for a few days but wasn’t sure what to increase to or for how long. Was thinking maybe 5 mg for 5 days but will try 7 if that’s the standard flare protocol.
That's just what is suggested - we find that a decent increase for a few days works better than creeping up or just adding a couple of mg, 5mg might well be enough - always difficult to forecast.
Hi again, I increased to 5mg for a couple of days but didn’t notice any difference so increased to 7mg yesterday. I know it’s only been 2 days but I’m not noticing any difference yet, arm’s, neck and shoulders still aching quite a lot. I’m wondering if I left it too long before I increased from the 1.5mg as I was on it for some time without realising my aches were due to PMR. I think I was ok on 2mg from recollection but I’m not absolutely certain as I thought the aches were due to lying with my arms under the pillow at night so I may have had the pains at 2mg too, I just can’t remember. Anyway, I’m wondering if I need to wait a couple of days now to see if the aches improve or whether to increase some more, and if I do increase, will it be a case of jump back down to 2 or 3mg after a couple of weeks or will I need to come back down slowly (.5mg at a time). Sorry for all the questions and thank you so much for all your help and advice 🙏
I hope you are just being impatient - a couple of days isn;t long and it is often harder to get things under control after a flare. But maybe a week at 10mg would be preferable to trying less for longer - it is the time rather than the dose that seems to be crucial.
Hi there, update on increase… had 3 days on 5mg and today is my 7th day on 7mg. There is some improvement but I’ve still got niggling aches and some stiffness although definitely not as bad. I’m not sure what to do now. I’m guessing I might need to increase a bit more but I’m not sure how it goes with tapering then. I know it says to stay on the higher dose for a few days then drop back down to just above where the flare started but I’m not sure what the maximum time is that I can stay on the higher dose and still be able to do that. Also the fact I’ve increased more than 5mg. do I still drop 5mg or however much I’ve increased by? I’m assuming that if you’re on a higher dose for over a certain length of time then you need to taper more slowly, is this right?
You can stay on higher doses for up to 14days, you still have a few to go.. so I’d go for that…
.. and maybe drop down in 2 or even 3 steps… for 5-7 days each step - then down to 3mg (no lower) and stay there for at least a month before you even think about restarting tapering proper.
I’m just wondering what happens if the pains haven’t gone by day 14? I’ve taken 8mg today and only have another 3 days to go. It’s an odd sensation that I’m experiencing. Twinges in the muscles in my upper back and neck. Presume it’s the pred attacking the inflammation. Just not sure it will clear by day 14 and what to do if it doesn’t?
Who knows what will happen in 3 days... if still the same then you can stay on higher dose... but that may mean you cannot reduce as quickly as we normally suggest - and/or get medical advice.
Hi there, so I went from 1.5mg. to 2, 5, 7 and 8 in the space of 2 weeks. It made a noticeable difference but didn’t clear it completely. I was still getting niggles at 8mg. The last 2 days I have come down to 6mg and I’m feeling more pain in my shoulders so I’m guessing I might need to go back up to 9 or 10 and stay there until the pain goes and then start a slower taper? I’ve made an appointment to see my GP but can’t get until week after next.
I’m not sure what else it could be and it does feel like PMR pain. It’s not in one spot, it moves around and feels worse in the mornings. I think maybe if I’d increased to 10 for a few days like you said I might have got on top of the pain. I stuck at 7 for 7 days which was a mistake. The only other thing I can do is carry on at 6mg for a few days and see how I go. I don’t seem as bad when I’m busy, it’s the mornings that seem worse.
It NEVER works well creeping up the dose and you end up needing more in the end. What time do you take the pred? I'm sure you will have seen us talking about 2am being the ideal time to take it, the new inflammation doesn't get to take hold at all, It starts from about 4-4.30am so the sooner after that you take the pred the quicker it will work and the sooner you will be symptom-free.
Creeping up the dose is what I’ve done but 7mg was 5mg more than what I was on so as that’s the standard increase for a flare I thought it might do the trick. I’ve always taken them in the morning with breakfast so that my stomach isn’t empty. I’ll carry on with 6mg. I’m not in agony it’s just there. Sounds odd but it feels like the muscles are bubbling 😄
My gut is saying it was a flare that was coming on for some time but because it was only in my shoulders and I had no hip or leg pain like before I didn’t suspect PMR. I was using gel but it didn’t do much. It does feel like PMR but I can’t be certain obviously. The back pain has gone now it’s just in the neck and shoulders and worse in the mornings. I’ll continue the pattern 6, 4 and 3 for now and see how I go.
Have you changed your bedding/pillows recently? Or do they maybe need to be changed? Sleeping position can have a lot to do with how you are in the morning - me too, but I can't identify why one morning I can get out of bed without any pain and the next I can't!!!
That’s interesting. It’s like a fluttering sensation in my shoulders and neck. I wouldn’t say it’s painful just uncomfortable. I probably will reduce in a day or 2 and see what happens.
You sound exactly like me at the moment. I’ve been on 2mg for over a year now trying to reduce using every method I know but keep having to go back up to 2 mg.
This last time I decided to stick it out and continue reducing very slowly, hoping my muscle aches were due to my adrenals. Unfortunately, the pain in my shoulders, neck and back have just got worse and worse so I’ve upped my dose by an extra 5 mg and within 24 hours the pains are gone. I shall stay on 7mg for 5 days then try again in a few weeks. It is what it is…….so I’ll just keep trying and fingers crossed one day I’ll succeed hopefully 😀
Your body is telling you pretty clearly that you NEED 2mg at present because the PMR is still there at a lowish level that needs 2mg pred to manage. It is better to NOT force the taper because every time symptoms flare it can be harder to get it under control again. And you might well find it means you end up going the wrong way on dose and needing more. Even slightly too low a dose will result in the excess inflammation building up slowly over time and you could end up back at the very beginning where you were before pred.
Fingers crossed for you. I didn’t realise my pains were due to pmr as they were only in my shoulders and not in my legs and hips as they were before. Eventually after weeks of gradually getting worse I realised it was pmr. Going back to 2mg where I was ok for a while didn’t work. I tried 5mg for a couple of days but no joy. I’m on 7mg now for last 2 days but still got aching arms, neck and shoulders so I think I left it too late and might need to increase even more. Wishing you all the best 🤞
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