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Crystalcave
Crystalcave

hello fellow sufferers, I had a left hip replacement in August due to chronic hip dysplacia. I have had pmr for 4 1/2 years now and had reduced to 9 mg before I went in for the surgery. On the day of surgery they gave me a pred booster to keep me stabilised and up to three weeks ago was fine.  Having physio and began to feel that all was going great.  Three weeks ago I began to get bad pain in my hips, knees and thigh muscles.  Also couldn't sleep through the night couldn't do my exercises due to the pain and started to get really bad night sweats. Over the last couple of weeks I have increased my pred from 9 mg to 19 mg a day.  I did it gradually 1 mg over a couple of days until the pains went away. It was wonderful to be pain free again but I'm not happy to have put my pred up so much.  I'm still not sleeping and having nightly sweats.  The last two days I have started to get the pains in my legs again, I can't concentrate its so bad.  I feel so down about it all and my Rheumy s not going to be happy.  Have I done the right thing in increasing?   

0 likes, 5 replies

5 Replies

  • constance.de
    constance.de Crystalcave

    Posted

    If I were you I would have gone straight to 19mgs to zap it, then reduce every few days until I reached 9mgs again.  However, I am by no means an expert.

    We all feel 'down' occasionally, part of PMR I'm afraid.  Try to relax and realize you are not alone.  Always someone on here to help/advise.

     Best wishes from Constance. 💐

    • Crystalcave
      Crystalcave constance.de

      Posted

      Thank you Constance,  you've just said exactly what I thought I should have done.  I went up slowly because I was hoping to reach my pain level at a much lower level than 19 mg.  I'm still in a bit of pain but reluctant to go up any further.  It's just so bad during the night at the moment but I do know for sure that it will eventually settle down again, it's just getting through until then.  

      I do appreciate your comments,  take care, Sue.

  • snapperblue
    snapperblue Crystalcave

    Posted

    HI, Crystalcave- What stuck me as odd about your story is the lag between your surgery and the recurrence of PMR.  I wonder if the flare is related to the surgery at all?  I assume that you recognize the kind of PMR pain that is characteristic of PMR for you, and couldn't be pain from your adjusted gait or something else related to the new hip.

    Also, this seems to be a very severe flare, to require such a large increase in pred to get relief.  

      

    I don't see that you had an alternative to increasing your dose. We all hate doing this, since decreasing is such a slow and trying process. I hope your rheumatologist is not so emotionally fragile that he (or she) gets upset about this but instead can focus on what is going on that has caused this setback.  

    All the best!

    • Crystalcave
      Crystalcave snapperblue

      Posted

      Hi snapper blue,  I know what you mean by the delay. At first I thought, great I'm finally on the road to recovery, then two weeks later hit the wall.  I must admit at first I wasn't sure if it was the pmr, talked to my physio and he thought my hip recovery was going really well.  But now I know for sure it is pmr pain, it's quite distinctive in its characteristics, as you probably know.  It's going to be a slow reduce I think.  My Rheumy is not at all sympathetic, he just wants me to reduce as quickly as possible, but he's not the one in pain.

      thanks for the comments,

      Sue

    • snapperblue
      snapperblue Crystalcave

      Posted

      Sigh.  Doctors.

      My doctor says "Treat the patient, not the average."  If YOU are having PMR pain, you need to cope with that, not race to reduce the pred.

      PMR pain has definite locations and characteristics.  Your doctor has never experienced this (I assume), but those on this forum know that is true and that you can distinguish PMR from other pain. We all want to get off the pred- does your doctor think you are taking this for fun?- but as Eileen always says, the goal is not getting off pred as fast as possible, but finding the lowest dose that CONTROLS THE SYMPTOMS.  Many doctors seem to think the latter is not important.  Grr.

      Good luck and/or change doctors!  

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