During the second half of last year I was bouncing between 10mg and 8mg. When I got down to 8mg I felt dreadful and quickly upped the dosage. In January 2025 I saw a consultant and he drew up a new reduction plan. A week ago I got down from 8.5mg to 8mg and I’m now suffering. Can’t believe how such a small reduction can make such a difference. Taking a painkiller (co-codamol 15/500) helps a lot but I use these sparingly and have only used 12 in the whole of March. Can anyone suggest anything else to help me keep to the plan? I don’t want to up my dosage but as Mike Tyson said:
“Everybody has a plan until they get punched in the face”
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InTheMoors
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How did you actually reduce? Was it an overnight drop - ie. from 8.5mg one day to 8mg the next…or using one of slower tapering plan [taking a few weeks] we always talk about.
That linked helped explain something that the consultant didn't mention directly.
I note the bit where it says this about flare ups:
Paracetamol (or equivalent) will not help.
The consultant advised that I take co-codamol to help when reducing so he was presumably thinking along the lines of steroid withdrawal. Painkillers do help so I've just taken two, taking my monthly total to fourteen. It would have been helpful if the consultant had explained things a bit better!
I shall work on the basis of steroid withdrawal and work through it.
If you repeatedly flare at the same sort of dose - in your case 8mg - that is your body telling you that you have arrived at your interim destination, the lowest effective dose at present, You are never reducing relentlessly to zero, you are carrying out a process of titration to adjust the dose to your ideal dose, the lowest amount of pred that manages the inflammation as well as the starting dose did.
Pred cures nothing, it is a management strategy and at any stage of your journey with PMR and pred you need enough to manage the daily new amount of inflammation created in the body in the early morning. If you take too little, even slightly too little, the unmanaged bit of inflammation each day will build up over time until there is enough to make you feel the symptoms.
When you get into a yoyo situation as you seem to have, you are skating on very thin ice - the more you do it, the harder it becomes to get things under control when you have flared and then to taper again.
Just because there was an outline plan it doesn't mean you are going to be able to complete it - you have come to a point where you have to mark time for a while until the underlying autoimmune disease has worn itself out a bit and calms down. Then you might get lower - but it might be while.
Just because there was an outline plan it doesn't mean you are going to be able to complete it
I wish my doctor understood that. He seems to think that PMR should follow a plan. I don't know why he thinks this. He is young and may have had little practical experience of it.
For some reason I don't think the medical profession and PMR are a good mix.
From the link from DL it looks like I have steroid withdrawal which is different to a flare up. I'll battle on.
I feel a lot happier following your reply and that of DL.
"For some reason I don't think the medical profession and PMR are a good mix."
Sometimes we feel the same way!! I really wish I knew what makes them think that PMR is due to a short-lived autoinflammatory disorder that spontaneously self-destructs after a given timespan. Nothing else in rheumatology does so why should it?
I wouldn't be too sure - the problem suddenly occurs at a similar dose. If it were steroid withdrawal I would expect it to happen at other doses too.
I wouldn't be too sure - the problem suddenly occurs at a similar dose. If it were steroid withdrawal I would expect it to happen at other doses too.
Getting down from 10 mg has always been a problem. I think that part of the problem was that I initially came down too quickly. I went from 15 mg to 12.5 mg and from 12.5 mg to 10 mg quite quickly and easy. It didn't work quite so easily coming down from 10 mg.
Today has been a much better day (no painkillers) so hopefully I'm through this episode. I finally feel OK on 8 mg. after a week of coming down from 8.5 mg.
Again thanks to you and DL. i now have a better idea of what I'm dealing with.
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