Frustrated

[sweathead]

I have been on Pred for 18 months. Got down really quickly to 10mg, then very slowly down to 6mg but can't get past this. A bit like a yo yo - 6, 7, 10mg then back down to 6mg then back comes the aches. How long should I expect this to continue? The ideal, pain free, is 7mg.

[DorsetLady PMRGCAuk volunteer]

Hi,

“ The ideal, pain free, is 7mg.”

Well in that case stay there for a few months. The idea of tapering is to find the lowest dose that gives you relief, not reduce relentlessly to zero.

For you - at the moment - that is 7mg. Doesn’t mean you won’t get lower - but not at right now .

It’s also the level when your adrenal need to start working again, so that sometimes makes it difficult to taper.

It’s no failure to stop at one dose for a few months, in fact some experts and in some guidelines it recommends staying at 10mg for anything up to a year.

You did say you got to 10mg very quickly, now time to ease your foot off the pedal.

So give yourself a couple of months then try again, but only 0,5mg a time - and using a slow taper - this is just one version - there are others - healthunlocked.com/pmrgcauk...

[sweathead in reply to DorsetLady]

Thank you. I was feeling a bit of a failure. Will go back to 7 for a couple of months and see how it goes.

[SheffieldJane]

Everyone is very different. It took me a year with about 3 serious tries but that was the hump. Normal after this. Sure it was my Adrenal function making me feel awful now and then of course I developed GCA, so maybe I am not your best example.

[PMRpro Ambassador]

Then stay at 7mg for a time and stop yoyoing which is one of the worst things you can do.

You were never heading relelntlessly to zero - you are titrating the dose of pred to find your optimum dose: the lowest dose that manages the symptoms as well as the starting dose did. This takes all the variables into account - disease activity, weight, absorption of the oral dose, your response to pred and your lifestyle etc. All of those things are factors.

It doesn't mean you won't get lower - just not yet.

[Mary63]

I was stuck trying to get from 7mg to 6.5mg for 18 months. Kept trying...Pain came back... Six months later I have managed to get to 5.5. My expectation these days (in comparison to how I was in my first 3 years or so) is that I won’t succeed at the next dose reduction. Then it feels great when I can reduce by 0.5mg!

[Marijo1951]

I got down to 5 mg but then had an alarming flare of GCA symptoms so went up to 10 mg for a few days and then reduced to 8. I managed to get a video appointment with my rheumatologist who said I'd done the right thing and to continue on 8 for a month and then go to 7.5 for a while and to take it slowly from there. I have another video appointment in September.

[Lindalang]

Have been told 5 and under are happy levels for drs....

Nearly there don’t worry

It will happen when body is ready

[GlynisE]

My rheumatologist said anything under 7.5 is fine so don’t beat yourself up about it.

[Telian]

It’s common to have to stick at the lower doses longer than you’ve been used to. Don’t worry and listen to your body. You will get lower when your body agrees to it then only 0.5mg reductions.

I remained on doses similar for 6-8 weeks then stayed on 3mg for 18 months - never got lower. Then had a flare now trying to reduce from 8.5mg and having difficulty second time around.