I was diagnosed with PMR 5 years ago and I am now down to 1mg pred as of a month ago.It’s been hard as everyone here knows! My question is should I stay on 1mg for now? I am having problems with back pain which I have had since my twenties and I am having an MRI next week but I am sure they will say more “wear and tear”. I am very optimistic it is not PMR as I have no other symptoms. I wondered if remaining on such a low dose is harmful or could be beneficial?
Thank you for all your help on this life changing journey, I would have really struggled without everyone’s input.🥰
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Bubble56
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I’d stay on it for another month or two -and see how you feel. You can always try reducing to 0.5mg at that stage, and if that’s no issue eventually try to reduce zero. But there is no rush.
And although you say you don’t think you have PMR issues, it’s surprising how many think that at 1mg, but find out at zero it’s a different picture.
After 5 & a half years of PMR & GCA I finally reached zero Pred in May after a couple of months on 0.5. Sadly I started aching after a month & it got worse. I tried paracetamol & the occasional cocodamol but it only took the edge off. Tried 2.5mg Pred on the advice of my rheumatologist & bingo, I felt fine! I’m now back on 0.5 for a while & will try again in a month or so, but I feel so much better now.
I was about to say that too. IMHOfrom what I've read and heard from others, a low dose of Pred is not harmful and preferable to risking it all flaring up again. I remember in the Covid years many GPS rushed people off low doses of steroids because they were afraid of what might hapen if you got Covid and I heard many tales of how people's PMR flared up or had been dormant and came back.
There is no rush at this stage, so let things settle, but the ultimate aim is always to get off the pred, even low doses. People on maintenance doses will have tried several times and come to a sticking point - but even then over time some may get off eventually. You can also reduce by 1/4mg at a time if you want to take it really slow. Anyway, well done!
I got down to 1mg a couple of years ago but had to go up to 2mg for the whole of last year. I started reducing by 1/4 mg very very slowly on the DSNS in January of this year and have now just reached 1mg. Am planning to stay for a couple of months on 1mg then will start again very slowly to reduce again by 1.4 mg
As they say there is no rush and slowly slowly at such low doses.
Good luck with your reduction hopefully it will happen at some point, I’m sure, but only when the body is ready.
I think sometimes we underestimate the power of PMR and how it affects our bodies
Probably not harmful - and may well be beneficial. Many people discover 1mg and even 1/2mg holds a lot of inflammation but zero is a step too far. Prof Dasgupta told us during Covid he often leaves patients on 2-3mg longterm to reduce the likelihood of relapses.
My experience was a bit like 9lives in that I got to zero (2020) but had to go on pred again after about six weeks. Later I had a major flare. However that settled and I took a couple of years of slow, slow tapering and finally in February of this year (2024) actually forgot a pred dose (.5 mg every few days), and thought, well, maybe I've had my last dose. I've not taken pred since (writing this mid September) and PMRwise feel better than I have for years. Of course ageing is having its way with me!
So there is hope, and meanwhile there is nothing wrong with staying on a tiny dose for a long time. 🍀
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