First it helps, then it doesn't?

Posted , 4 users are following.

Well, I was going down on the pred and tried 5mg for a month, but ended up in great PMR pain, so the dr said go up to 10.  So 10 made me feel better for about a month, but now it doesn't seem to help as much.  My arms and hips are hurting all day long.  When I went to the dr the other day, he wanted me to try 7.5mg if I could before seeing him again in three months.  Why would 10 be good for awhile and now not, I wonder?  Is that the PMR or my need for the steroid that's making the pain?

2 likes, 4 replies

4 Replies

  • Posted

    Debbie

    The drop is too big, once on 10mg, the current thinking is that no more than 10% at a time. There is a pattern that can be followed and if you send me a PM with your email address,  I will send you a copy and you can try it and see if it works for you.

    Also have you had your Vit D levels checked as Vit D deficiency can and does have pain exactly like PMR (it is an exclusion test that is done before diagnosing with PMR but quite often it is missed).  If it is low you need to be prescribed Dekristol at the right level.  There is a paper on this site, use the search engine which tells you all about Vit D deficiency.   

  • Posted

    Hello - you say you tried 5mg for a month, but what dose were you on before?  From experience, steroids need to be reduced in no more than 10% steps, going from 10 to 7.5 is more than 10%.  Try going back to your GP, go up to 15mg, to stabilse pain, then, reduce in 10% stages - 15 > 13.5 > 11 > 10 > 9 etc.  Reducing by more than 10% will give you pain, and even when you reduce by 10% it may take a few days to re-stabilise the pain before moving on.  General Practicioners are general and may not appreciate the need for a slow but steady reduction over a long period of time in order to achieve the lowest possible dose of Pred, whilst still controlling the disease. Hope this helps. smile
  • Posted

    Thank you both for your replies.  My dr is a specialist who is well known and everything, but he says he's very conservative with prednisone because of the awful side effects.  I'm not sure he realizes how crummy I feel, though.  I've got to be better at communicating, I think.  I will call his office this week and see if he will up the 10 to 15 and then try your reducing method.  I wonder if he ever reads this forum. ha!
    • Posted

      Debbie,

      Let us hope that your GP never gets either PMR or GCA.

      So pred has its side effects, but they are well known and not eveybody gets them, some people never experience any.

      He need to look at you as a patient and listen to what you are saying.  Pred is the only medication standing between you and GCA, never mind the PMR.   Have a talk to him gently.

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