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Prednisone Tapering and always have to go back up.

Posted , 10 users are following.

Christine55570
Christine55570

I know that there is a lot of discussion on tapering prednisone, and that's where my problem lies.  I've been on prednisone since Nov 2012 when I had c-diff.  I was put on 20mg of prd until Jan 2013 when I lost the hearing in my right ear.  Went to an ENT and he prescribed 80mg of prd for 3 weeks.  Then just stopped as the ENT doc didn't tell me to taper my dose.  In Feb 2013 I had a recurrence of c-diff and put back on prd.  To my chigrin I had another c-diff occurrence in March and April 2013.  May 15 2013 I woke up and couldn't get out of bed let alone walk as everything hurt.  Went to ER and no one could explain my symptoms, but was kept on 20mg of prd.  I went to my PCP and he prescribed all kinds of pain pills and patches, not what I wanted to take.  However, because of so much pain I reluctantly took them.  Found a new doctor in July 2013 and he got me in to see a Rheumatologist at the University of Michigan where the doctor diagnosed me as having Polymyalgia Rheumatica and raised the dose of prd to 40mg with tapering after two weeks.  As soon as I started the tapering all my issues flared up.  Went to see her again two weeks later and she started me on Humira which started to work, however to make a long story short I landed in the hospital 11 times in 18 months where it was decided to take me off Humira and start on Methotrexate and Folic Acid with a tapering of the prednisone.  It is now 2016 and I can't seem to get past 10mg of prd before I have all types of flare ups.  The odd part of this is that no one really knows whats wrong with me as I've been diagnosed with PR, Reactive Arthritis, Rheumatoid Arthritis and still trying to reduce my PRD and can't get past 10mg before I start having all kinds of problems.  I still am on Methotrexate 20mg and Actinol once a week and folic acid 1 x a day.  This is so frustrating as I want to get off of PRD because it has affected my weight upwards as I'm always hungry.  The doctor just says to me would you rather be heavier or in pain.  Stupid question.  I'm now wondering if I have fibromyalgia as when I get these flare ups it's not just my joints that hurt but all my muscles, my entire body hurts and it is very difficult to do anything. 

0 likes, 26 replies

26 Replies

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  • helen88071
    helen88071 Christine55570

    Posted

    Hi Christine, your story resonates with mine, & I am now on pred, (back to 10mg this week) was down to 5...flare. Methotrexate and Humira (tried Enbrel for about 9mths) 

    and am now seeing a bionatural GP to try to kick start my own immune system at reasonable levels, as I now have thyriod and psoriasis - all a dam pain but not incapacitating. I frequently have to adjust my pred, as I awoke one day unable to move at all and left rather foolish when an hour later an intravenous dose of pred had me up and about as happy as a sandboy! It made me realise that the drs do not know what we are going through and later confirmed this with my consultant and he told me to adjust it as felt ok for me. Hope this is useful.

    • Christine55570
      Christine55570 helen88071

      Posted

      After reading a lot of the posts here last night I readjusted my PRD dose to 10mg and woke up this morning feeling soooo much better.  Gosh I could walk, breathe, use a pencil and toilet without any difficulties.  I'm kind of getting the impression that only the person having this difficulty with tapering can effectively control their own pain.  I am going to try Anhaga's reduction plan and tell my Rheumatologist what I'm doing because I will need new scripts for 10mg, 5mg and 1mg.  Wish me luck. 
    • Christine55570
      Christine55570 Oregonjohn-UK

      Posted

      Thank you for your reply.  Just to let everyone know I did up my PRD to 10mg but still had to take a pain pill last night but when I woke up this morning I felt so much better and as the day goes on I feel better with ever hour that passes.  Words cannot express how good I feel.  Since it is the weekend and can't get in touch with my Rheumy I sent her an email through mychart with the suggestions on the tapering from Anhaga.  I hope she agrees with the tapering because I will need a script for the 10mg of PRD. 
    • erika59785
      erika59785 Christine55570

      Posted

      Christine, same here......trying to go down to 7 mg from 7 1/2 has been painful because I did not have enough sense to use the DSNS method.

      I live and learn......

    • Anhaga
      Anhaga Christine55570

      Posted

      Credit where credit is due - the tapering plan is from our PMR angel EileenH.
  • Oregonjohn-UK
    Oregonjohn-UK Christine55570

    Posted

    I can only repeat what others have said already - take it easy, slow is the name of the game.  Best of luck Christine smile
  • angela43016
    angela43016 Christine55570

    Posted

    I can only sympathise with you, I too am on my third flare up, even got down to 2mg pred and then back up to 60. Very frustrating as I know it sounds petty but I have put on two stone. The hunger is like no other, unless anyone has experienced this they cannot understand. I think the only thing you can do, like me is hang in there. Good luck
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