How do we know if we're better?

Posted , 10 users are following.

I have been taking Prednisolone for 15 months, starting on 15mgs and now down to 3mgs. Recently I've been feeling much better, more energy, more tolerant of exercise. Since being on the Pred, I've had little or no pain and stiffness.

I would like to try stopping the Pred and am wondering if this is a crazy idea. Logic tells me that if I need the Pred, it wouldn't be long before the old symptoms reappeared.

So is Pred like antidepressants or antibiotics which should not be stopped abruptly. What is the worst that could happen?

 

0 likes, 8 replies

8 Replies

  • Posted

    I was on 15 mgs in January and my symptoms of stiff neck and unable to lift my arms beyond horizontal disappeared overnight!!

    I have been very gradually decreasing but rheumatologist said not to decrease over hip replacement period. So am now on 4mg. He said don't try to hurry it as it will then return! Decrease by 1 mg per month as long as your bloods are ok. Have not had any return of arm and neck stiffness. 

    Hope that helps!

    Merelina

  • Posted

    Thanks Merelina. No, no way taper when you're about to undergo surgery. In my case I've never seen a rheumatologist, only my GP. I have a variety of doses and more or less get on with it myself.

    I do know your adrenals must catch up, as they've been resting due to the cortisol from the medication. I think I'll try 2.5 mgs from tomorrow and see how it goes.

  • Posted

    After being on pred for 10 years I thought I knew it all. Had been on 5mg for months and felt so good I just quit. Didn't ask doc or pharmacy.  It took quite awhile so when it came back I didn't recognize it right away and took awhile before I went to doc.  It has been 2 years and I'm only at 7 now. Until I joined this group I was totally ignorant of the way to reduce.  So I guess my suggestion to you is don't quit at 3mg. Reduce by 1/2mg until you know the pain isn't returning. 

  • Posted

    If I were you, I would take it slow. I was down to a quarter mg and stopped the pred a few times testing the waters before I was able to stop comfortably.
  • Posted

    The worst that can happen is you will find the pred was controlling your PMR brilliantly and when you stop suddenly you will relapse quickly and suffer a flare and need a larger dose. The second worse thing will be that your PMR is indeed in remission but you have painful pred withdrawal.

    Don't take a chance, go very slow. Patience will be rewarded.

  • Posted

    Well linfran I'm not going to respond about your decision to get off of your Prednisone because I'm not knowledgeable enough to do that. I want to address the last statement you made asking what the worst thing would be to stop prednisone cold turkey instead of tapering. There's a lot that can happen if you stop prednisone cold turkey without tapering. You can actually die that way. You're on such a low dose it's highly unlikely that that will happen. But I just want to make sure that you know that you can't just stop prednisone without tapering.

  • Posted

    You must not stop the pred suddenly - even if you do feel really well. At this stage there is also returning adrenal function to consider and you have to reduce slowly to make sure that is OK as if your cortisol production doesn't increase as you decrease your pred dose you could become ill, even VERY ill.

    And don't be lulled into a false sense of security - as the activity of the cause of the PMR wanes you will feel better whatever dose you are at but it doesn't mean it hasn't gone away entirely. Keep reducing slowly - go 1/2mg at a time and see how it is. But you wouldn't be the first to think everything was great at 1mg and stop only to find a month or so later that the dripping tap of inflammation had filled the bucket and overflowed!

    • Posted

      No - not a good morning! "it hasn't gone away" should be "it has gone away"!

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