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What is goal when reducing prednisone?

Posted , 10 users are following.

jeannecatlover
jeannecatlover

From this forum, I have gotten the impression that when reducing prednisone, I should be aware when the PMR pain starts to return, and when that happens, I should increase pred to a level where I don't have PMR pain, and then try reducing again, perhaps slower or perhaps after some time has passed.

My rheumatologist, in contrast, believes the goal when reducing pred should be to keep pain at a level where I "can function."  I've had chronic pain (Myofascial Pain Syndrome and herniated discs) for 30 years, and PMR for about 6 months. So I have learned to "function" at high levels of pain.  I could function before I started on pred, so if that's the goal, I don't know why she put me on it in the first place.  Clearly, I would like a life with less pain, which is why I'm on the pred.  I'm not aiming just to be able to "function" but to reduce my pain and have a better life.  

So I'd love to know whether I'm interpreting what I've read on this group correctly or not--that I should follow the procedure I described in the first paragraph of this post, rather than just continuing to reduce as my pain returns, so long as I can still "function."

Thanks. 

0 likes, 10 replies

10 Replies

  • EileenH
    EileenH jeannecatlover

    Posted

    Since only you can know whether you can function that is a rather moot point! However - you should be aiming for the same level of pain/discomfort you had with the starting dose, that is your guideline. If the PMR symptoms start to return it is a sign the daily amount of inflammation isn't being cleared out and the left-overs are starting to mount up. Like a dripping tap will eventually fill a bucket and it overflows, that inflammation will mount up until you are at the same state you were originally, will a full blown flare of the PMR.

    You reduce slowly until you feel the discomfort due to the PMR is back, then you go back to the previous dose where you are better. I also have MPS - it get that treated in a more targetted manner and that allows me to manage on a lower dose for the PMR. Is that an option?

  • Anhaga
    Anhaga jeannecatlover

    Posted

    At a somewhat less significant level I'm encountering the same issue.  Before PMR I had noticeable pain and stiffness from osteoarthritis, in fact its symptoms more closely matched the classic definition of PMR symptoms than the actual PMR, which made me think for a while that maybe I'd had PMR for far longer than I had thought.  On the other hand, with reduced dose and return of certain symptoms I've found that many of the returned symptoms go away completely if I have to take an analgesic for headache for example.  This indicates to me that I'm not experiencing PMR pain as such.  And the other key difference is that it doesn't cause the same disability that PMR unchecked was causing.  It is indeed a balancing act.  Pred may relieve the arthritis symptoms quite nicely but I certainly don't want to use it for that purpose as then I feel I'm taking too much pred.  There just is a certain level of pain one learns to live with.  But I don't tolerate return of PMR pain (beyond the little niggles I think most of us get at certain times of day depending when pred is at its lowest point) and had to deal with a flare a while ago which meant I roughly quadrupled the dose I'd been taking (from 1.5 to, briefly, 7) and after many months am only back to 2.5 and seem stuck here.  It's been a bit tricky lately as my inflammation markers are finally into a normal range, which they had never been until now.  But fortunately my doctor is reasonable and has given me a virtually unlimited supply of 1 mg tablets and instructions to taper as I feel able. smile

  • Michdonn
    Michdonn jeannecatlover

    Posted

    Jeannecatlover, we are all different, each PMR case has it own each peculiarities. I started at 20 mg got down to 8 tapering to 7 had a bad flare and had to go back up to 30 mg to get relief. Was on the 30 mg for about 6 weeks became PMR pain free and have been since. Currently at 8 mg and tapering to 7.5 mg, I am very active, think positive and try to smile.

    Good luck on your journey. ☺️

    • Heron31716
      Heron31716 Michdonn

      Posted

      Hi are you completely symptom free?  ie no stiffness, arms/legs feeling swollen and no tiredness?  If so it may be time for me to up my pred a bit to get symptom free.

      Cheers

      Heron

       

  • Heron31716
    Heron31716 jeannecatlover

    Posted

    Hi I was also advised that the aim is to get the dose to a tolerable level. The main driver is to reduce the inflammation that could cause damage. Still learning about the condition though.

    Best regards

    Heron

    • Michdonn
      Michdonn Heron31716

      Posted

      Hi Heron, that has been my objective to take everything out of my diet that could cause inflammation. Nothing taste that good. Currently tapering from 8 to 7.5 mg, PMR pain free since last June except for a couple of minor flares. Every individual and PMR case is different and everyone has to figure out what works for them. Try to stay active, positive and smile. Smiling ☺️
  • BettyE
    BettyE jeannecatlover

    Posted

    I'd like to know who defines " tolerable".

    I had miraculous pain relief and would have felt short changed if I'd been expected to tolerate PMR pain just to serve an arbitrary schedule.

    Like Anhaga ( and many others) there were times when I had to increase my dose and at one stage had to return to 10 for three months having been down to, I think, seven.

    Unless there are special considerations i'd be in favour of proceeding as you have quoted in your first paragraph.

    Is your Rheumy open to persuasion? Why does s/he think just being able to function is ok?

     

    • jeannecatlover
      jeannecatlover BettyE

      Posted

      Thanks very much for the advice.  This really helps me to feel okay about increasing my dose.  The Rheumy has it in her head from somewhere that being able to function is the goal, so she almost had me convinced.  When I showed her the dead slow and nearly stop method that people on this forum talk about all the time, she had never seen it before and took notes.  I have enough pills for now to increase and not worry about what she thinks I should do, so I'm going to give that a try.  Thanks to everyone who responded, and I welcome any additional thoughts/advice you have.  This group is wonderful.

    • BettyE
      BettyE jeannecatlover

      Posted

        Three cheers for your rheumy taking notes re the DSNS reduction method. With luck the next patient might get more consideration than you did. Good luck with the reductions.
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