PMR, Prednisone Taper

Posted , 8 users are following.

I am 2+ years into PMR and thru ups and downs have learned the hard work of tapering slowly (Eileen's method). I tapered from 7-1/2m to 7m just over two weeks ago and I am having pain, issues, so I have decided to stay at 7-1/2 a while longer (I had been at 7-1/2 for 6 weeks). So when I went to my written ledger to record my dose and progress I noticed that back in March-May 2015 I had spent 43 days on 7m!!! BUT, my records indicated that those 43 days were somewhat miserable. So, I must go for the pain free dose, longer, rather than get distracted by tapering...correct?

This prednisone has scrambled my brain! Thank you for any comments.

0 likes, 7 replies

7 Replies

  • Posted

    I would say so, it's what I've been doing! As they say on here, it's not a race to zero... 

    Oh the brain!!... I do understand. I am very tired of my denseness! I'm at 6mg tapering to 5.5 and had really hoped that would be starting to improve but I'm still doing, thinking and saying stupid things! X

  • Posted

    Yes, I'd say that is quite correct. I think you have identified your "longer term" dose pretty accurately (twice over now). 7.5mg is what is called a "physiological dose" -about the amount the body would make in the form of cortisol anyway. The side effects shouldn't be too bad and it should be enough to keep you comfortable until the underlying cause of the PMR burns out.

    What happened to send you back to a higher dose so you had to taper again? Was the flare last year difficult to contain? 

    This is also the point at which your body has to start to wake up and at lower doses will have to make its own cortisol - and that alone can lead to discomfort and problems if you try to reduce further. There's no hurry - spend a couple of months or even more at the doses now. Just every so often try another 1/2mg drop because if you don't you will never know if the PMR has gone or faded even further so you can mange with an even lower dose.

    • Posted

      Ah, yes!...after 43 days @7m I tapered to 6m...stayed with it for two weeks...then proceeded down the path to a major flare that was like the "beginning" of my PMR.  Had to go back to 10m. 20 weeks later I had tapered to 7-12m again....should have gone to 6-1/2m instead of 6m...especially in that "zone" of tapering. Early on my rheumatology suggested pretty fast tapering, which is the norm outside of this forum.I am so happy to have this forum...Thank you!
  • Posted

    Good and sound advice as ever from Eileen.  You have hit your present limit and it's not that high a dose.
  • Posted

    Hi Kathy,

    Everything that has been said rings true for me as well.  I'm 3 yrs. in (39+ months but who's counting😛) and, after 3 flares I'm  at 6.25 and reducing very very slowly (slower than DSNS) and once I get to the lower dose I stay there till I feel good and have no pain. I am one of the lucky ones that only has stiffness when managed properly. 

    I don't know if you've had one but you might want to have an adrenal function test. At 7.5 it may not be kicking in yet but it would be a good baseline for future decreases that cause you trouble.

    Thinking of pred as our friend and not the enemy takes some of the urgency of decreasing away. Stay at the dose that keeps you feeling well and, as Eileen says, try to decrease every once in a while to see if the PMR is still around.

    Good luck👍

    Diana🌸

     

  • Posted

    I was stuck for a while at 7.  Not very long, really, but had to try several times before 6.5 was okay.  This is just a suggestion - why not go to your comfort dose, but every couple of weeks try .5 mg less and see what happens.  Although I'm with those who suggest you make sure your comfort dose really is effective, so don't try to experiment until you are sure.  It's a way to start nudging those adrenals into action, and sort of a slowmotion version of dead slow, now that I think about it.....
    • Posted

      Five mg is a good place to hang around at - it is significantly below the biological boundary but not so low as to be a major risk while you adrenals wake up. One of the top PMR consultants in the UK likes to keep his patients there for anything up to 9 months - a bit less isn't going to hurt but it is a place to take a rest.

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