The last couple of tapers.

[Missmymuscles]

I’m on 1mg of prednisone. Has anyone successfully dropped from 1 to zero instead of going to 1/2 first?

[DorsetLady PMRGCAuk volunteer]

I’m sure many people have -but why the rush? ?

Very often the last hurdle is the most difficult —so why -as the old saying goes spoil the ship for a ha’porth of tar?

[Missmymuscles in reply to DorsetLady]

I have gone down 1 mg each month. I didn’t know if I should do the slow taper between 1 and 1/2 or between 1 and zero. So many people on this board are quick to make incorrect assumptions.

[DorsetLady PMRGCAuk volunteer in reply to Missmymuscles]

I didn’t know if I should do the slow taper between 1 and 1/2 or between 1 and zero

If you’d specifically asked that question, I would have answered it (probably with much the same comment-ie.the slower the better)-as would others -but you didn’t. You asked if anyone had done it..not quite the same thing.

[PMRpro Ambassador]

Quite possibly but you are not likely to find them here - people tend to like to put this phase of their life behind them.

But going via 1/2mg is usually more comfortable and it isn't slow when it works.

[SnazzyD]

May I throw a question back? If you wanted to be at zero in 6 months would it feel worse to drop from one to zero at the 6 month stage or do 0.5mg by 3 months and zero by 6 months? Or have I totally missed your point?

[LemonZest11]

Heck I tapered by 0.25mg each time at this stage. Good luck with 1mg!

[dancersize2 in reply to LemonZest11]

Me too. Took a year to go from 1 to zero very slowly.

[LemonZest11 in reply to dancersize2]

I hear you sister! Are you ok now?

[Gossiplady in reply to LemonZest11]

hi lemonzest! I too have been doing the 0.25mg taper since at the 5mg stage and find it is working well. Now just starting 2.25mg with a smile. For about 3 weeks. Too frightened of stress in my life cropping up at any time , what a baby, but the idea of the return to that awful pain or stiffness is too upsetting. If at any time stress arrives I automatically go back one quarter for a few days. As our mentors say on this forum, slow, slow, slow.

[LemonZest11 in reply to Gossiplady]

It's the only way 🤞

[Zareda]

I’ve been on 1 mg for about almost a year. I have tried to drop to 1/2mg twice and both times were unsuccessful by week two. So I am back at 1mg and stuck there. Good luck with your attempts to get lower.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

Did you try and drop down overnight or use one of the slower tapering plans we suggest?

If the former, see these -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Zareda in reply to DorsetLady]

I’ve tried to do it both ways and I’m fine until the second week and then the pains come back. I’m trying not to go above 1mg so I’m not flip flopping so it takes me about three weeks to get back to a tolerable pain level after trying 1/2mg. Next taper I will try 1/4mg with the slow taper plan.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

okay….but it sounds as if 1mg is YOUR level for the time being….so maybe just accept that for a few months… and then try again with the smaller reduction as you suggest.

And for many PMR lasts a lot longer than the 2 years often quoted in guidelines and by Rheumies, so there is no rush for you to taper.

Good luck when you decide to try again.

[Zareda in reply to DorsetLady]

Thank you. I trust your input and will do as you suggest. I have more or less accepted that 1mg is my level for now and my rheumy has finally gotten off my back about getting to zero.., at least til I see him again in May. I’m thankful to be where I am at present. Just hoping to avoid any flares where I need to go above 1mg.

[Gossiplady in reply to DorsetLady]

hi DL, bless you for your wonderful advice for all of us, likewise PMRpro. When I was first diagnosed with this awful disease, my lovely doctor immediately said “you are in for a rough ride , probably about three years. “ just approaching two years, down to 2.25mg and smiling. Slow slow slow.

[LemonZest11 in reply to Zareda]

Try cutting into quarters. You might just find it works.

[Zareda in reply to LemonZest11]

Thanks……will give that a try.

[Meggsy in reply to Zareda]

I’ve been doing 1/4mg slow tapers since being on 2.5mg. All ok so far at 0.5mg.

[Charlie1boy]

Can’t think why you’d want to do that! I would follow SnazzyD’s advice, and try a half mg for three months first, and see how that goes.

Good luck anyway.

[HeronNS]

If I were you I would not try to speed things up. You've got this far, don't risk a flare.

I tapered in half mg steps from 2 to zero, taking a year to do it (slow taper, three months for each step). Sadly, despite trying to trick my body into thinking it didn't need pred any more, after six weeks at zero I had to take pred again. Three years ago. I'm hoping recent taper to 1.5 works. This time I'm not going to go by any schedule but let my body tell me when it's really okay to go down another step. And be thankful that, so far, I really can manage on these vanishingly low doses!

[PhoebeMum]

Hi. I had PMR and GCA and had taken 6 years to get from 40mgs(!) to 1mg. Stayed on the 1mg another year then decided worth trying every other day 1mg for a month. Then, in June 2022, stopped...and I've been ok...so far!I respect the illness has gone into remission but feel the timing of discontinuing was relevant. My Rheumatologist has always said, don't reduce in the winter months. Hope this helps.

[Stanca]

I am so interested in knowing how you did it . I have been on prednisolone for nearly three years and va last year I tried slowly very slowly to taper down to 0 . But then all my pains got worse again and I really couldn’t manage so I went back to 4 then 3 and currently on 2 mg a day . I would love to get down but even 1 and a half is not enough for me . Any amazing advice on how to do it ?

Or do I have to stay on 2 and keep going ?

[DorsetLady PMRGCAuk volunteer in reply to Stanca]

I would say your PMR is still very much alive and kicking -it is a self-limiting disease, so it won’t go until it is ready to. …something your doctors very often don’t explain. Neither do they tell you it can last a lot longer than the 2years often quoted.

You will get below your current level one day, but not until your PMR allows you to.

Stay on 2mg for a few more months then try again, preferably with a slower tapering plan -if you haven’t already tried that approach. .

[Stanca in reply to DorsetLady]

thank you! Very useful reply .

[DorsetLady PMRGCAuk volunteer in reply to Stanca]

as per PMRpro reply -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Stanca]

You will need enough pred as long as the underlying autoimmune disorder is active which it obviously is. There is nothing you can do to get off pred until the autoimmune bit burns out and goes into remission. It isn't your fault, you haven't done anything wrong, it is just the way the illness is. You are actually on a low dose that isn't causing problems and Prof Dasgupta, co-founder of the charity, told us a few years ago that he often keeps patients at 2-3mg longer term as it reduces the likelihood of relapses. There is a lot of talk that PMR lasts 2 years - that is a load of rubbish. Lots of people take 4 to 5 years to get off pred and some take longer - 2 or 3 years is relatively unusual.

Every so often you need to try a 1/2mg reduction, preferably using one of the slowed tapers we go on about, to see if the disease activity is getting any lower. It will eventually and you will get lower and even off pred altogether. But you can't force it.

[Stanca in reply to PMRpro]

thank you very much for your kind and very useful reply. Where do I find the slowed tapers you go on about ?

But thank you so much 😊

[PMRpro Ambassador in reply to Stanca]

They are in the FAQs under Tapering (under T). The link is in the box below your post at the top of the page or under Pinned posts - to the right on a computer, further down the page on a phone. And DorsetLady has linked them in a reply to Zareda further up the thread.