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I am reducing pred to 7mg but still have some neck pain. I am keen to reduce the pred but not sure h

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louisa85653
louisa85653

I have reduced pred to 7mg after a few months at 8.  I had hoped to be reduced to 3 by now but had a flare up before Christmas so my planned reduction was delayed.  I still have some neck and shoulder pain but this is tolerable.  Should I be staying at this level for another month?  I am having a monthly blood test PSV on Friday - should I also be requesting CRP? My GP says not to bother with CRP but the rheumatologist said I should have CRP too?  This is confusing!

0 likes, 12 replies

12 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey louisa85653

    Posted

    Louisa, you haven't said how long you have been at 7mg but if you have neck and shoulder pain, I would definitely not consider reducing the Pred any further at this stage in case there is lurking inflammation which could build further into another flare following a further reduction now.   My rheumy always tested both my ESR and CRP - the latter is often felt by some medics to be the more reliable marker of inflammation, so trust your rheumy in this case rather than your GP!  
    • louisa85653
      louisa85653 MrsO-UK_Surrey

      Posted

      Thank you - I have only been a 7 for a month - though I had got down to that level 2 years ago (after 6 months on pred starting at 15).  My rheumatologist raised it to 20 a couple of months later as he was concerned there might be a vasculitis diagnosis).  It has taken much longer than I expected to reduce but then perhaps that is something I have to get used to!

      Thanks for the advice on CRP - I will ask again on Friday....

  • FlipDover_Aust
    FlipDover_Aust louisa85653

    Posted

    I'd be going with your rheumatologist on this one - although CRP and ESR are not definitive in measuring PMR.

    The only 'test' is how you feel.

    If you are happy to drop, you can try it - you can always go back up to where you last felt ok.

    • louisa85653
      louisa85653 FlipDover_Aust

      Posted

      THank you  - that is helpful.  I am continually tired at the moment and think (know) it is because I have been overdoing things a bit recently - pacing is not always easy...
  • sandra28555
    sandra28555 louisa85653

    Posted

    It sure wouldn't be worth it to me to reduce it and have a flair. Too much pain involved. I will be having my sample taken tomorrow to see if I have the GCA. My head is hurting so bad it makes my ears ring. Please don't bring that pain upon yourself if you can help it. If you are feeling pretty good why rock the boat. 
    • louisa85653
      louisa85653 sandra28555

      Posted

      Thank you Sandra.  That seems sensible.  And all the very best to you with your sample.  I do hope your head will stop hurting so much soon too.
  • EileenH
    EileenH louisa85653

    Posted

    CRP is felt to be more accurate in this context (providing it works for you, mine has never been raised) so your GP is wrong I'm afraid. The combination of both is felt to be more sensitive. However - since you are still on pred it may not rise or take a long time to rise after inflammation starts up again.

    However - if you have returning pain it suggests you are at or close to the long term so-called "maintenance dose". There is no virtue in having pain just to get to a lower dose once you are below 8mg - that is about the same amount of corticosteroid as your body makes anyway so is associated with minimum side effects. Not taking enough leaves unmanaged inflammation in the body which carries risks of its own.

    You cannot make a plan that is written in stone:  "I had hoped to be reduced to 3 by now but had a flare ..."  While the aspiration to reduce must always be there you are NEVER reducing relentlessly to zero in PMR or GCA. You are looking for the lowest dose that provides the same level of relief that you got with the starting dose of 15mg or so in PMR.

    And from here on, a month at a new dose is barely enough - your body has to start to make cortisol itself. One estimate for the time it takes your body to settle down to normal production again is 1 month for every month you were on pred - if you have been on it a long time that may seem a bit OTT, but it is certainly true that it can take at least a year to get back to normal even after reaching zero which is why we should still carry a warning card and tell healthcare staff you were on long term pred.

    • louisa85653
      louisa85653 EileenH

      Posted

      Thanks Eileen

      I wish I had come onto this form two and a half years ago when I was first diagnosed!  This is all incredibly helpful and realistic.  

      I started with 15mg two and a half years ago and after some reduction, it was increased to 20 when my rheumatologist suspected vasculitis.  Since then it has gone up and down a bit and I have felt quite flummoxed though I have had to delay reductions over the last few months due to a flare up before CHristmas and constant tiredness and some pain when I have been overdoing things a bit.

      Trouble is that when I was first diagnosed, I was given a sheet saying how the reduction would work and I had this foolish assumption that things would progress to a complete cure in a couple of years maximum.  I am now at the stage of being more satisfied with finding a maintenance level - yes, of course I will always aim for reduction and keeping trying to pace, exercise, eat well etc but life often gets in the way....:-)

    • FlipDover_Aust
      FlipDover_Aust louisa85653

      Posted

      I think we all start out with the same expectation, but come to the same realisation as you... that you have to learn to live with it.
    • EileenH
      EileenH louisa85653

      Posted

      "but life often gets in the way..."

      You can say that again!!!!!!!  rolleyes   lol

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      In the words of the immortal John Lennon... "Life is what happens to you while you're busy making other plans." 

      (who presumably took the words from a Reader's Digest article in 1957 - funny the things you know) lol

    • louisa85653
      louisa85653 FlipDover_Aust

      Posted

      Brilliant! This has always been one of my favourite quotes.  I didn't know about the Reader's Digest article though!  
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