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Should I expect to feel some pain when tapering prednisolone?

Posted , 5 users are following.

AllyCD
AllyCD

Sorry to bother you all again. To recap, Been taking pred for 3.5 years, tapered to 4.5mg but on reaching 4mg experienced small flare. increased to 9mgs for several days then tapered back down to 5mgs over several weeks. Am now experiencing moderate neck and shoulder stiffness and some pain. Is it better to control this with pain killers and stick at 5mgs or should I increase again? Note that in Kate Gilbert's book she appears to accept that the duration of PMR is accompanied by some pain. Would rather not increase pred but seem to be in a game with trying to fool body. I was told by GP that it would 'burn itself out' but there seem to be rather a lot of embers left. It puts me in mind of a game called 'statues' played as a child. Want to be as kind to body as poss hence question re pain killers. Am I likely to prolong PMR if I don't squash it with more pred or does it not matter which method I use I.e. pain killers? Thank you all so much for your patience with me it is truly

0 likes, 8 replies

8 Replies

  • rosemary83494
    rosemary83494 AllyCD

    Posted

    I have been on Pred for nearly three years now, and have found that if you have a flare the only way to get rid of the pain is to go up high enough until the pain completely goes. Pain killers merely seem to mask it, and not actually get rid of it. I had to recently go up from 4mg to 20mg before the pain went in my right shoulder, which had been really bad. I have come down again quite quickly from 20 mg once the pain went, which you can do if you have been at a lower dose. I was on 20mg for 6 days, down to 10 mg for 5 days, and then down to 5mg, which is one above where I had the flare. I aim to stay at 5mg for a while, haven't decided how long yet, but I am in no rush having been up and down many times before. Good luck with getting your pain under control again.

    • AllyCD
      AllyCD rosemary83494

      Posted

      Hi Rosemary, just want to say a thanks to all but not sure how the new system works. So many thanks to you for the encouragement. I have settled at 6mgs for the foreseeable future and like you I shall stay at this level for a while. Pain is now under control (I hope, but I never know what to expect with PMR)!

    • Michdonn
      Michdonn AllyCD

      Posted

      AllyCD, try to think of it this way the pain is a symptom of the inflammation. Once the inflammation is under control you can reduce further. I used the DSNS method successfully with the smallest amounts I could. Also not eating any foods that cause inflammation. I know everyone is different, but it worked for me. Good luck on the rest of your PMR journey, try to stay active, positive and smile. 🙂

  • EileenH
    EileenH AllyCD

    Posted

    Yes - but how long did he say it would take to burn out! Only half of patients are off pred by 6 years. Only 1 in 5 are off pred in under a year. PMR comes when it likes, does what it likes and goes when it likes - and there is nothing identified yet that changes that just as there is no definitive trigger for it starting.

    Painkillers rarely work for PMR pain - they may work for steroid withdrawal pain (it appears as soon as you reduce the dose and then improves over the following week or so) but not the PMR pain. The degree of freedom from pain you achieved with the starting dose is your guide - you are aiming to find the lowest dose that gives the same result. You should never feel worse at the end of a reduction step than you did at the end of the previous step. Painkillers may help other things that have been masked by the pred - such as osteoarthritis but if 1mg more red deals with that it is possibly safer than chronic use of paracetamol or NSAIDs for that.

    You aren't fooling your body at all - you are keeping control of the inflammation that the underlying autoimmune disorder causes. It doesn't deal with the cause no, but it does control the damage the inflammation is doing.

    • AllyCD
      AllyCD EileenH

      Posted

      thank you Eileen. Have sent reply to all via Anhaga, hope it comes up on your screen and Rosemary's with new system in place. All much appreciated.

  • Anhaga
    Anhaga AllyCD

    Edited

    If you have a chance to get some physio, make sure any therapist you see has an understanding of PMR, you may find that some gentle strengthening exercises, and exercises to improve range of motion, will be helpful.

    • AllyCD
      AllyCD Anhaga

      Edited

      Thank you all. Have raised dose to 6mgs and stopped painkillers. Can feel some energy returning, enough to sand and repaint front door. Haven't done anything like that for a while. Just trying to work out what is going on with me has been wearing but now shoulders are allowing me to achieve things and if they ache tomorrow hopefully the door is to blame not PMR. Physio is definitely something I will try after lockdown eases, used to see chiropractor for back, I enjoy the feeling of me time.

    • Michdonn
      Michdonn AllyCD

      Posted

      AllyCD, at one I had to go from 7 mg to 30 mg for 6 weeks because I never got ahead of the inflammation. NSAIDS mask pain, if at all with PMR, the worse thing you can do in my estimation, you need to control the inflammation, Pred will do that. Good luck on the rest of your PMR journey. 🙂

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