Cant seem to taper

Hi All,

started on 15mg Pred in March, tried reducing slowly to 12.5, then pains returned in July.

hospital put me back up to 13 for a month but still not pain free.

should I be?

have a face to face next week with a specialist and Im dreading it. Dont know what to ask and am totally intimidated by doctors

no other health probs apart from pmr

they are making noises about putting me on a steroid sparing agent. isnt this a bit soon? ive only been on pred for 5 months.

any help/advice greatly appreciated.

[Bcol]

Good morning anon3656, sorry to hear of your problems. There will, I'm quite sure, be many others along with advice and help as the morning progresses. Couple of questions. When you started on 15mg were you pain and symptom free and how quickly did you start your tapering? If you haven't already found them and fancy some "light" reading the FAQ,'s section will give you lots of help/advice on pretty much all aspects of PMR. I'm surprised that they would be mentioning a steroid sparer after only 5 months.

[Hidden in reply to Bcol]

the thing is i cant really remember. i could hardly walk just before diagnosed so i think the relief was instant but cant remember if i was 100% pain free or not, probably about 90%, the relief was so great that I didnt really take much notice! i started tapering in about may/june time.

[DorsetLady PMRGCAuk volunteer]

When you say tried reducing slowly to 12.5mg….what do you mean by slowly?

Using a slow taper that we talk about like DSNS or my version - I.e. taking 4-5 weeks to get from 15 to 12.5mg? or

Talking smaller steps…like 1mg a time?

Or did you just step down in one 2.5mg in one go, from one day to the next?

If the latter, then that’s probably your problem, although it’s a recognised taper from the guidelines not everyone can attain it.

Even if you used a slower version, if you go below the level you need, you will have issues. It only gets you from a) to b) more slowly, but if b) is too low, it’s too low.

Another cause could be you trying to return to ‘normal’ life just because you feel better….you can’t ..maybe have a read of this post -

healthunlocked.com/pmrgcauk...

[piglette]

I have heard that going on a sparing agent right at the beginning works better than going on one later on. Although sometimes they do not work at all for some people. This is anecdotal and could just be an old wives’ tale.