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Reduction

Posted , 12 users are following.

wendy43316
wendy43316

Hi I've been on pred for 18 months started on 15mg and been reducing , I've got down to 1 and 0 alternate days but started getting pains in the top of my legs and stiffness as well also pain in my shoulders. What is the best thing to do ?

0 likes, 46 replies

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  • jean12178
    jean12178 wendy43316

    Posted

    Request a CRP blood test, which would indicate inflammation in your body...I reduced prednisone  too quickly , pain returned , just had another CRP test last week.... it was 18 (should be 1) so Rheumetologist put me back on 10 mg prednisone for two weeks then we'll do another CRP test...if it is still high we'll increase prednisone....Rheumitologist explained to me that the damage being done to the inside of my arteries from the inflammation is very dangerous, so staying on enough prednisone to eleviate that inflammation is imperative.

    • Michdonn
      Michdonn jean12178

      Posted

      Everything I have read rheumy is correct, I wish my rheumy giving me that advice. My body is finally starting to feel better, but I figure this time around I would prefer reducing slowly, zero as a goal. I am also a little afraid of GCA. Good luck
  • nick67069
    nick67069 wendy43316

    Posted

    Wendy, you have reduced from 15 to 1mg in record time. As you say, pain and stiffness returned.  Why risk full flair at this point, which would require you to go to 5, 10mg  and then you would have to start all over?  It is better to prevent problems.  One way to do it is to increase the dose to 3-5mg for just few days (2-5 days) to flush the system and then go back to whatever dose you felt comfortable ( assuming 1-2 mg)... That is what I do.
  • EileenH
    EileenH wendy43316

    Posted

    Go back to the last dose you were comfortable at, 1mg every day at a guess. You wouldn't be the first person to discover that tiny 1mg dose was enough to keep PMR symptoms at bay!!!! But if that isn't enough - go higher. It isn't worth it to risk a flare for a couple of mg of pred. How quickly did you reduce from about 3mg?

    • BettyE
      BettyE EileenH

      Posted

      Eileen, you've heard this before ( more than once very likely as I never remember who will have seen what. ) I think it reinforces what has been said about even apparently tiny doses of Pred. being significant.

      In exactly a week's time it will be four years since I had a hip replacement. At the pre-op interviews one of the professionals was the hospital pharmacist. I told her I had reduced my Pred. to 1mg. She said that on no account should I reduce any further until I was discharged by the consultant six weeks after the op. Obviously she thought that the 1mg. was significant.

       

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, need some advice, I am​ schedule to reduce from 30 mg to 27.5 on Saturday. I called request at what pain level I reduce the Phed. The nurse answer was, when you have more good days then bad days in a week. Well not happy with that answer. I would much prefer reducing after normal lab work and a stretch good days. Why drop when you are in pain. What your thinking?

      Thanks

    • EileenH
      EileenH Michdonn

      Posted

      The best result you got at the very beginning should be a guide - if you haven't got to that then you have to ask questions. I have to admit that the fact you have needed so much to get it under control does bother me a bit and the fact your nurse is telling you to reduce while you still apparently have more pain than you did then isn't confidence-inspiring! Are they confident it is "just" PMR? 

      We have said all along - if you have more pain than you have been used to - don't reduce. And if your inflammatory markers are above where they used to be - same again. If they work for you, use them. They don't work for everyone because sometimes they don't rise or rise again when on pred. But if they are high because of a flare and not something else like a chest infection or trauma - wait.

    • Michdonn
      Michdonn EileenH

      Posted

      Thanks EileenH, that is exactly what I feel, if I am not feeling normal I am not reducing. This flare up seem to have started right after I had a sore throat and head cold. Just like the original episode started after intestinal virus.

      I am going to let my body tell me, do not need another flare up!

      Thanks again for your wisdom!

    • EileenH
      EileenH Michdonn

      Posted

      Normal? Or normal for PMR? Not quite the same!wink
    • Michdonn
      Michdonn EileenH

      Posted

      Today went for a nice stroll around the pond. When I was finished the best I have felt in some time. Thank God.

      Thanks again for your wisdom!

    • EileenH
      EileenH Michdonn

      Posted

      It really is worth forcing yourself outside for a short walk - even if all you can manage in 10mins at a time you can have a rest and do another 10mins. When I was still fairly wobbly a few years ago I could manage the 40mins to a local restaurant - after a 2+ hour lunch break I could walk home. It did help that it was downhill!!!!
    • Michdonn
      Michdonn EileenH

      Posted

      Well I do feel good this morning, but looking outside at the snow coming down I think I will wait a bit for my stroll, but I will do it! Got to love it!
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