Hello all - I have a question about whether my symptoms are normal during tapering. I'd been on 10mg, tried to taper straight to 9mg - unsuccessful as various aches and pains came back pretty quickly. I went back up to 10mg until things settled down, then went onto DSNS taper. All good until I got to 1 day old, 3 days new - on the third day of new (9mg), everything started hurting again. That was on Thursday. Admittedly, all the pains weren't nearly as bad as things were at the very start of this journey, but are they part of a normal taper, or it is a sign that I'm reducing too quickly for my body?
I'm sure I've read somewhere that it's not uncommon for the body to complain a bit during tapering, but the issue is whether things improve over a few days, or get worse. So I'm confused as to whether to stick it out for a bit longer (how long?) to see if things settle, or if I'm better going back up to 10mg until I get comfortable again and then try tapering by 0.5mg?
I'm sorry to read you are having aches and pains. I taper by a half mg from 10. I wonder if it would be better to try that.
going from 10 to 9 was the hardest. Not sure why. I am now at 8 and 7.5 and doing well. I take aleve when in pain. Have not taken in awhile.
I am going to 8 at present and so far so good with some aches but not a flare.
However slowly you taper you are NEVER tapering to zero - you are looking for the lowest dose that gives you the same result as the original starting dose did. It really does sound as if 9mg is a step too far for your body. It took a few days to get there so I doubt it is steroid withdrawal, it is that the new dose isn't quite enough to manage the daily dose of inflammation, it has built up to the level you notice again.
If it were me, I'd go back to alternate days of 9 and 10 (which is probably the right dose, equivalent to 9.5mg per day). It might need a couple of days of a higher dose to clear out the inflammation but I'd try going back first and only have a higher dose if that doesn't work. But don't let it get worse - or you will have a real flare.
why do you say never getting to zero? That is discouraging.
Sorry, badly put - I forgot to include the word "relentlessly" which I usually say.
I mean at any given stage you are not aiming for zero - but the lowest dose that manages your symptoms for now. It doesn't mean that the point you find is the lowest you will ever get - it is the lowest you will get for now. In a couple of months you should try again with a small reduction to see if it works. But it is silly to realise the PMR is beginning to surface but continue to reduce. That
As you do manage to get lower you will get closer to zero - and maybe you WILL get to zero as hte lowest dose. I said "never aiming for zero" (which should have been "never aiming relentlessly for zero"
since many people think that is what they are doing from the start - especially GPs and many rheumatologists because that is what you do after a course of pred for other illnesses.
But if you think you will just keep reducing without a hiccup you will very often be disappointed. Or be convinced you've done something wrong that stops you getting lower when you haven't.
Eileen's explanation is great. I want to encourage you by saying that at a certain point although you may not be down to zero, with care you may well get down to a nice small dose which is nearly as good as zero. If nothing else, PMR teaches us patience! It has taken me well over a year to reach that reasonably comfortable dose. Of course I'd like to be at zero, but 4 or 3, or thereabouts, is nearly as good, and if it takes another year or even more to get to zero, or perhaps a longterm holding dose around 1, so be it. Slowly, slowly.... 🐚
Thanks for all responses. I'll try alternative 10mg and 9mg over a few days to see if that gets me back to where I was. One more question though... how do you know if symptoms are down to insufficient pred dealing with inflamation levels vs pred withdrawal?
I meant "alternating 10 mg and 9mg"
Steroid withdrawal pain will appear immediately you try to reduce a dose - the first day pretty much, as your body objects to the change in what it is used to. If you stick at that dose it may improve over the next few days, or take as much as a couple of weeks.
A flare due to insufficient pred to deal with the symptoms usually takes a bit longer to appear and then the symptoms increase day by day.
Hello JW89
I get pains on the 3rd day and need paracetamol to settle at night for about 5 days so the taper is fine for 3 days as you say, but then my body complains for a further 5 then improves over the next few days and I stay at the new dose for a month or so before thinking of reducing again.
also I can't taper by 10% it's too much for me so I agree with other people a 5% taper might help.
Good luck and take care.
I agree. There is always a point in a taper when I think this is it, I'm going to have to stay here or increase slightly. Whether it's the other things I do to try to reduce inflammation or just patience, I think it's a combination of the two, I've always been able to complete the very slow taper. I usually reduce by .5 at a time, and up to this point have dropped a further .5 halfway through the taper. At 3 mg working towards 2.5 I'm not dropping that second .5 mg. Will give each half mg the time it needs. Getting better at splitting tablets!
Hi Anhaga
do you mean splitting the actual tablet, I have bought a tablet splitter from the pharmacy £1.29 it's brilliant.
Yes, although my pharmacy gave me a free one, promoting some drug company but I don't mind that. I've been using up a rather large supply of unused 5 mg by turning them into 2.5. Yesterday I calculated I had enough for nearly 3 months worth at that rate. It's easier than splitting a tiny 1 mg, but someday that will come....
I reduced at 1/4 mg a step when I hit 10mg. It looks like this,
9 3/4 one week, 9 1/2 the next week, etc. It takes about 4 days for my body to stabilize after reducing. When I hit 9 I would look at how I felt and then continue with the next step. It took 2.5 yrs to get to zero, where I have been for 4 months. There were several times I had to go back to the previous level and stay for two months. Medical texts indicate that at 7-8mg your body has to pickup the load. That took timers I was stuck at 7mg and 4mg for a time.
You're in the zero club! Cool. 