Hi all, sorry if this sounds confusing, ill try my best to explain.
Been on 15mg Pred for 6 weeks, reduced last week by doc to 12.5. Some pains have returned but not excruciating. I take pills at 7am and normally feel a lot better between 11am through to 5am. Though not 100% pain free.
I asked doc if I should be 100% pain free before reducing and she said you will never be at 100%.
Is this correct?
If I keep reducing and the pain keeps returning but worse at each stage, Im wondering whats the point of being on this medication if its all going to come back eventually.
My inflammatory markers were very high at 66, at the point I was still on 15 of Pred they had reduced to 9. So my logic is thinking that they will be increasing again as some of the pain has come back.
Bit confused to say the least.
Should I go back to doc and say it was too soon to reduce? I dont want her to think Im trying to go over her head and tell her what to do though.
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Michael, some of us are pain free with the right dose of pred, others never achieve that.
The point of the medication is to prevent uncontrolled inflammation which can lead to other problems and possibly GCA.
A 2.5mg drop is quite a big one - some do manage that, but the recommended level is no more than 10% of the current dose. If it was me, I'd be inclined to go back to 15 for a few days, and then try 13.5 and see how it goes.
When Europe/UK wake up I'm sure you'll get plenty of advice.
As stated not everyone gets 100% relief...but sounds as if you were okay at 15mg. Although the drop to 12,5mg is a recognised taper, not everyone can achieve that ....some need to reduce by 1mg steps.
Also because you felt much better at 15mg have you tried to return to normal life? Unfortunately you can’t, the underlying illness is still there, the Pred is only controlling the inflammation cause by said illness.
You do need to get the symptom back under control, and if symptoms remain, your inflammation markers are likely to rise again.
It depends on the person and it also depends to some extent on the way they use the pred, However, the state you achieved on the starting dose is your guide and as you reduce you shouldn't feel worse than you did then in terms of PMR pain. Mind you, it is nice to meet a doctors who is realistic about the effects of pred! Some think they hand over the pills and everyone is back to normal - if only it were that simple.
Some people don't cope well with the 2.5mg change in dose and most of us on this forum would say it is, more often than not, too much at one go. When tapering, each reduction step shouldn't be more than 10% of the current dose and 2.5mg is more than that.
Is the pain that returned stable, increasing or decreasing? Stable or decreasing is acceptable and suggests that it is a reaction to the change in dose and it is time to be patient - but increasing is a sign that the dose is too low and the inflammation is building up again.
PMR is life changing, however you should not have more pain than when you first started taking pred. Perhaps on reduction you may have pain for a day or two but otherwise you should be OK unless you have reduced too much.
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