Can any one tell me please what the Recommended pattern is for coming down off steroids,at the moment I am on 17.5 & 16 starting Monday,

[ritter]

[mickt]

Hi Riter , Are you not under a consultant rhuematoligist Ritter,or gp you should be getting advice on reduction as it could bring your symptoms back if you come down too quickly.I would be pushing yourself onto some one who can guide you.

[ritter in reply to mickt]

yes but he wanted me to drop much quicker than i am doing at the moment it was ridiculous i rang the nurse and he said to do it much slower and to listen to my body and Doc does not have a clue,ritter

[kingharold11]

this is a reduction plan put on this site by soojay

Good morning everybody, here is the reduction pattern which I think I posted sometime ago from a doctor on a usa website. Spoke to my GP and she agreed to it.

ie.Wk1.9998999. Wk2.9899899. Wk3.9898989. Wk4.8989898. Wk5.9888988

Wk6.8889888. Wk7.8888888. Good luck Soo.

[Celtic PMRGCAuk volunteer]

Ritter

Sadly there is no cast-in-stone recommended method for reducing steroids and most people will find that they have a different personal flash point that they reach where the inflammation is not quite under control at a particular dose, for the moment. However, the latest mantra is never to reduce by more than 10%, especially when at the lower doses - certainly the lower you get on the doses, the slower you need to go. I was very lucky in that under the guidance of my rheumatologist and my blood test results, I was able to reduce very successfully in textbook fashion from 40mgs down to 5mgs - but there the fun began and after increasing back up to 10 and returning back down to 5mgs fairly quickly, I was then advised to remain on the 5mg dose for 5-6 months, following which I reduced at a snail's pace!

The aim of most medics is to reduce the dose to the lowest dose that keeps symptoms away, but it's very difficult (impossible!) to know where each person's inflammation might surface again. Around the dose you are on now, I was able to reduce from 20 to 15mgs after just one week and, with blood tests remaining normal, I was then able to reduce to 12.5, remaining there for 14 days before reducing to 10mgs, again remaining there for 14 days. I was then recommended to slow my reductions to 1mg each month. This worked well for me but I stress that I had blood tests repeated before each reduction - if they had veered from normal my rheumy would have slowed them down. Some people don't have the luxury of blood tests to guide them, so obviously they then have to go by their symptoms and how they feel.

I think that it very much depends on how you have managed with your reductions thus far. If you have had problems, then obviously you will need to reduce more slowly and in smaller decrements than I managed. If you reduce and suffer an almost immediate return of pain then that can just be down to withdrawal symptoms and should resolve; however, if symptoms start returning a week or so after the reduction and worsen then that can point to a flare. If that happens, then an immediate return to the previous dose at which you felt comfortable, and remaining there for much longer this time can get control of the inflammation enabling you to try the reduction again.

I'm sorry if this doesn't sound very helpful but it is very much a case of finding what works for you as we are all so different in our response to both the illness and the treatment.

One important thing though is never to reduce if you have a busy week ahead but wait until you can relax with plenty of 'me' time to give your body time to adapt to the lower dose. Good luck!

[ritter in reply to Celtic]

Hi celtic,thank you for your time and detailed reply,you sound more informed than my Doc and Rheumy but together am just unfortunate to get a doc that does not know anything about GCA and a Rheumy that has no idea of a reduction plan or dare i say may not even care i have appointment with him or his side kick on the 12 Sept ,will let you know what he says,his nurse is more informed than he is and said to ring him anytime i want (never had that before) this is the chap that said listen to your body and up to now he is right over the last few weeks i have felt slightly better pain wise course that does not include all the nasty symptoms we all get,I do appreciate your time Celtic thank you Anne (ritter)

[Celtic PMRGCAuk volunteer in reply to ritter]

Hi again Anne

I do so understand and empathise with what it is like to have such uninformed medics, but so glad to hear that at least you seem to have a more caring and reassuring rheumy nurse with his great advice to "listen to your body" - I feel that having an informed rheumy or GP is half the battle with this illness. After a horrendous year with undiagnosed and therefore untreated PMR, with four GPs and a rheumy then unable to diagnose me, I succumbed to GCA, again only diagnosed after consulting 4 GPs over as many weeks. I then saw an alternative rheumy at another local hospital following the recommendation of my pharmacist and hit lucky as he has a special interest in PMR/GCA - needless to say I stuck with him throughout my illness and avoided the GP surgery! Remember, you can always ask a GP to refer you to an alternative rheumy for a second opinion if you aren't happy. Meanwhile, good luck on the 12th and with your next reduction.

[suzieh]

Celtics advice is good as always. Also the reduction plan from King Harold is good as it shows you how to go very slowly. I am managing to reduce very slowly - now on 8.5mg per day (started on 20mg last Xmas) and still feeling good. My Dr says no faster than 1 mg reduction per month. I have had blood tests monthly, and seen my Dr, before reducing to the next level. A few times I have stayed on a dose for a few weeks and have had a few days of feeling "off" with some pain returning (paracetamol has dealt with it). However no pain at present - I am hoping my PMR is on the way out.....POSITIVE thinking!!! Good luck with reducing ...... slowly, slowly!

[ritter in reply to suzieh]

Hi Suzieh,thank you, if it was not for this forum i would feel so alone and that is not right,not with our disease thank you so much,,Anne (ritter)

[rockyandzeus]

Hi Ritter,

I am being weaned off prednisone. It is a veerry slow process if one is to be successful. Find a doc who understands this, if you can. Research literature, there is plenty on internet, if your doc not familiar.

Basically, my rheumy had me go down 1mg a month, no decrease over stressful holiday or life moments.

Expect flare up(s) at around 7,6,5. You may have to go back up to last successful level. He(she) may 'park' you at a particular level if problems. I got down to 6, had a flare up and went to 8, have just gone back down to 7.

If you try to go down too fast, you may end up at very beginning. You will want to have a good doc to help you as they will be looking at things from the outside, if you know what I mean.

And, yes it means if you are on 10-12 mg it will take you a year to get off prednisone.( if higher dose, doc may ok larger decreases at first)

Good Luck,

Dorothy

[ritter]

Hi Dorothy when you rheumy had you decrease by 1mg a month what dose were you on at that time?I started 16mg to day for 15 days but just wondering if that should be for longer than 15 days,my Rheumy say just listen to your body he said to do it for a month if I wanted to,when I get down to 12.5 will definitely take a year to get off them.kind regards and good luck Anne,(ritter)