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Prednisone reduction.

Posted , 6 users are following.

janice01811
janice01811

How long does it take the body to get used to a reduction in prednisone?

0 likes, 14 replies

14 Replies

  • EileenH
    EileenH janice01811

    Posted

    It all depends. The smaller the reduction step or the longer you take to complete that step the less your body will notice it. 

    We used to suggest clearing the decks before trying a reduction - not having to do something in the week after you try to reduce helps. Then we realised making the step smaller made it much easier - and now we suggest spreading a 1mg drop over a few weeks. It is still possible to reduce at a rate of 1mg per month but it seems to reduce the risk of pain  - which has probably been thought to be a flare but isn't really, it is the body getting used to the reduction in pred. 

    There are two schemes doing the rounds, just different ways of counting. Both seem to reduce problems and are being used by quite a few people including a consultant in the NE for his patients.

    • janice01811
      janice01811 EileenH

      Posted

      Every time I reduced it aways started the pain at 5 days then at 10 days it was worst then leveled off but always there is some pain till the next reduction and then I start all over again is it sopose to be like this till you are off compleaty ? am on 6mgs with 1 mgs a month reductions. When dose you own body take over when you don't need much prednisone anymore ?
    • EileenH
      EileenH janice01811

      Posted

      Do you mean that you are always in pain? Does the constant pain get worse with each reduction?

      If that is what you mean then no, it shouldn't be like that. Few people are totally pain-free even whilst on pred but you need the lowest dose that keeps you as symptom-free as possible. The idea is not to reduce willy-nilly until you get to zero, whether you have pain or not, it is to reduce the dose until you find the lowest dose that works well. There may be a bit of pain or discomfort - but it shouldn't be bad enough to restrict your normal life greatly. 

      It isn't a case of "your own body taking over" - the pred dose is being used as an anti-inflammatory to manage the pain. Many people find that about 7mg is difficult and then again below 5mg. Many doctors like their patients to stop for several months at 5mg to allow their body to catch up. It is at about 7mg/day that you have got to the dose that is about the same as what your body would make anyway in the form of cortisol. Your body probably isn't making much of its own down to there because it knows there is plenty in the circulation to keep the body functioning. Below this your body is having to get the production line up and running again - so going extra slowly from here is a good idea. Any drop should not be more than 10% of the current dose - so actually you have got to the stage where a 1/2mg drop at a time is better anyway. As I say, many of us spread the drop over a few weeks to make it even gentler.

  • jenny_sussex
    jenny_sussex janice01811

    Posted

    Just thought I would share my recent experience.

    A sceptical rheumy who didn't consider that I had pmr required that I reduce from 15 to 12.5, to 10 then by 1every couple of weeks.

    I decided to go with it because I felt I needed to demonstrate that I did have the illness and I knew that the magic of pred was available!

    Well I actually started to wonder if I did have pmr - I got to 5mg without too much problem - few Aches and pains - I but nothing approaching the meltdown of last October.

    4, then 3 and starting to feel it but still only affected thighs, and groin, no arms as I was before so wondering maybe I had something else.

    Then 2mg and wham. 2 days of that and back up to 5mg, but I continued to deteriorate so have gone up to 10mg - not sure if I should have gone that far as I feel wonderful! And now realising that actually I was worse than I had thought for the last few weeks.

    Everyone - please take notice of the good advice from the 'mentors' on this forum, especially Eileen and Mrs O, but others as well.

    Take it slow and don't believe everything your rheumy tells you!

    Best wishes to all

    • EileenH
      EileenH jenny_sussex

      Posted

      I think the answer there is that if you are reducing as fast as that the increase in the inflammation is still happening without getting to the level that causes pain until you are way below the level you need. Does that make sense?

      When I was first put on pred it was 15mg for 2 weeks - fantastic, I felt totally human again. Then 10mg for 2 weeks - still good, no real problems, could have stayed there. Same with 5mg, the odd niggle but totally liveable with. Then less than 36 hours after the last dose, barely 10 hours after not taking a dose, I was in bed in more pain than I had been in beforehand. The rheumy wouldn't listen - totally disinterested in how well and not in pain I had been on pred. 

      I still believe that if I had reduced as I do now from the start I could have been at 10mg within a few months and would have identified the "right" long term dose then and overall taken far less pred than I have. I never got as comfortable after that first doctor-induced flare and reducing was always difficult they way they wanted. 

      Once the inflammation is back it must be hit hard - so I think your 10mg is fair enough and now you should creep down. You know the warning signs. Is your GP on board? Because I'm not sure I'd want to see that sceptical rheumy except to say: "I told you so".

  • jenny_sussex
    jenny_sussex janice01811

    Posted

    Just thought I would share my recent experience.

    A sceptical rheumy who didn't consider that I had pmr required that I reduce from 15 to 12.5, to 10 then by 1every couple of weeks.

    I decided to go with it because I felt I needed to demonstrate that I did have the illness and I knew that the magic of pred was available!

    Well I actually started to wonder if I did have pmr - I got to 5mg without too much problem - few Aches and pains - I but nothing approaching the meltdown of last October.

    4, then 3 and starting to feel it but still only affected thighs, and groin, no arms as I was before so wondering maybe I had something else.

    Then 2mg and wham. 2 days of that and back up to 5mg, but I continued to deteriorate so have gone up to 10mg - not sure if I should have gone that far as I feel wonderful! And now realising that actually I was worse than I had thought for the last few weeks.

    Everyone - please take notice of the good advice from the 'mentors' on this forum, especially Eileen and Mrs O, but others as well.

    Take it slow and don't believe everything your rheumy tells you!

    Best wishes to all

  • ronny78296
    ronny78296 janice01811

    Posted

    A reply, and a question to the Forum. I successfully reduced from 15mg to 9mg between October 2013 and March this year, with arm and shoulder protest for about a week at each drop. However, since trying to get below 9mg it has been harder. It took three weeks for my shoulder pain to settle down (it never goes completely) on the 9mg to 8.5 mg drop from April to May. From 8.5 to 8mg I continued to have shoulder pain but as it never got worse I assumed my body would adjust. My ESR had been normal throughout. However, two weeks into the 7.5 reduction in July my pain increased and I had to rest completely. I thought it might be due to a long drive and moving furniture around but it didn't go away so after 3 weeks on 7.5 I upped the dose to 8mg. Two weeks later I still have arm and shoulder pain in the morning and late at night. It is not keeping me awake but is not right, and is affecting my energy and fitness levels. I think I will up the dose to 8.25 and see if that makes a difference. I am out of the UK at the moment and not due to see the GP until September. Any advice?
    • EileenH
      EileenH ronny78296

      Posted

      Really there isn't a lot ot add to what has already been said. One thing I would say is that the Kirwan group in Bristol keep their PMR patients at 10mg for a year before continuing the reduction and find that reduces the flare rate from 3 in 5 to 1 in 5. 

      The other possibility - if all you have is that shoulder pain - is that you have bursitis in the shoulder that was better controlled at higher doses but is now breaking though at lower doses. It would probably be better treated by a local cortisone injection if all the other PMR symptoms are controlled - that would mean a lower overall dose of pred as it would be directed.

      There are also other shoulder problems that would be eased by oral pred but which are nothing to do with PMR and would certainly be aggravated by driving long distances and/or moving furniture. I'm thinking of rotator cuff injury, shoulder impingement and so on. Given the time lapse until you can see a GP - what are the options for emergency medical attention where you are? I made good use of our local healthcare here in Italy when we just here on extended stays before we moved. An EHIC card is a wonderful thing! Of course, it depends where you are but I'd hope you have medical insurance - and you declared the PMR!

    • ronny78296
      ronny78296 EileenH

      Posted

      Thanks Eileen, helpful as ever.  I hadn't considered the bursitis and I do have inflamed and tender spots on my right elbow and shoulder, though not on the other one. I think the 10mg for a year is a good idea - I felt great on 10mg but my GP is keen to reduce. I'll try and persuade her otherwise when I return and try the slight increase to 8.25 for now.
    • EileenH
      EileenH ronny78296

      Posted

      Just after my post is a link from mrsmop - I should have given it to you. It is the paper where the Bristol group presented its reduction etc to GPs. The paper is aimed at GPs so she may comply if you can persaude her to read. There are GPs who snort they "know EVERYTHING about PMR" - as they try to reduce the pred dose over a couple of months! Look there - I would bung it in here but the post will disappear for moderation.

       

    • mrsmop
      mrsmop EileenH

      Posted

      You ought to bung it in, it was moderated quickly today!
    • EileenH
      EileenH mrsmop

      Posted

      Actually I was being a bit lazy as I was in a hurry - my computer and internet are plays snails and tortoises today :-(

      If I put this in

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      it will take you to a post with other links to reliable information and another forum - and it won't be moderated! 

      But it means opening another tab, scrolling to the top, clicking on polymyalgia rheumatica and GCA (or whatever it is) and getting the complete list of threads and copying and pasting. I could already see yours had been "allowed" :-)

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