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Opinion on recent dosage decrease

Posted , 10 users are following.

rocketman42
rocketman42

I'm trying to decrease from 20mg prednisone that I've been on for a month or two. Dropped to 19mg three days ago. Today, the third day, I am feeling a return of the aches and pains and fatigue. Steroid withdrawal or flare.....how long should I stick with it to give it a  fair chance to hopefully resolve and stablilize ? 

0 likes, 15 replies

15 Replies

  • amkoffee
    amkoffee rocketman42

    Posted

    I would give it a week. It is likely neither of those. Simply your body adjusting to the dosage change. Some people experience some discomfort every time they taper. I personally find that tapering by .5 mg works better for me.
    • rocketman42
      rocketman42 amkoffee

      Posted

      I guess I meant my body adjusting to the change instead of "steroid withdrawal" ( thought they were the same ).  Forgot to mention dizziness as a prominent symptom too. 

    • Rimmy
      Rimmy rocketman42

      Posted

      Hi scotth42

      i also have had a few bouts of dizziness when reducing from similar levels. It usually only lasts a day or two after the reduction but it is most unpleasant asyou'd know. While I have attributed this to the tapering it could also however be the fact my iron levels were very low - something I discovered recently.

      All the best

    • Michdonn
      Michdonn rocketman42

      Posted

      scotth42, I get a bit dizzy or woozy if I move too quickly or get up too quickly, I think it is reducing the Pred, but do not remember having this the last time. I guess just one of those things! But still smiling 🙂

  • Michdonn
    Michdonn rocketman42

    Posted

    Hi scotth42, I also am tapering, but using a modified DSNS. Are you familiar with DSNS? If not check it here: https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    If you have any questions I will try and answer them. Good luck on your journey.

    • rocketman42
      rocketman42 Michdonn

      Posted

      Michdonn - thanks....I am familiar with it but at 20mg I didn't think a 5% decrease would be significant. Also need to get down off the 20 since I've been there too long. 

    • Michdonn
      Michdonn rocketman42

      Posted

      scotth42, that is why I am doing a modified version, working my way down from 30 mg. Is it necessary, I don't know, but figured better to be safe than sorry. I have had no problems and now at 17.5 next step will be 15.

      Good luck with your journey.

    • EileenH
      EileenH rocketman42

      Posted

      Depends on how you look at it whether it is "too long" - most experts would start a patient on 20mg for at least 6 weeks before reducing. The test is have the symptoms resolved as much as they are going to and are the blood markers (if applicable) normal.

      But some people are very sensitive to dose change - even if it doesn't actually cause steroid withdrawal rheumatism it may well make them feel unwell for a several days. Give it a week - and if it takes longer then next time try 0.5mg and see if that is better. If you feel OK then you could do another 0.5mg a week or so later.

  • amkoffee
    amkoffee rocketman42

    Posted

    I'm sure Eileen will comment soon as she is our resident expert on this disease. But I believe that steroid withdraw generally happens when your at a very low dosage and your adrenals haven't started making enough cortisone to replace the prednisone. And a flare can happen just any time Willy nilly. Typically when you've scheduled something fun to do that week. LOL

  • nick67069
    nick67069 rocketman42

    Posted

    Try using DSNS method. It is not necessary, but makes the reduction easier.  You are alternating new and old dose and body can adjust much easier. At higher does some people use 2-2.5mg steps,  and it should be OK as long as reduction is less then or close to  10% of the dose (for 20mg that would be 2mg).  I was able to drop in 2.5 steps all the way to 10mg, and then I changed to 1mg.  But everyone is different and you have to find what works for you.
  • liz12234
    liz12234 rocketman42

    Posted

    I generally found i had a few aches and pains when i changed my dosage. I recently started taking it between 3am and 4am as suggested many a time on here(or even earlier) and i wake up feeling fine and really wished i had done it sooner. Just changed dosage and nothings happening, hope it stays that way!
    • nick67069
      nick67069 liz12234

      Posted

      Liz, just  a small correction... If you are taking un-coated prednisone, the best time to take it is a between 1 and 2 AM. It takes  2-3 hours for prednisone to get into your system and cytokines are generated around  4-4:30AM.
    • Sars77
      Sars77 liz12234

      Posted

      Reading this post with interest about taking pred in early hours. Do you still manage to sleep ok? I find that the pred wakes me up & I become alert & sometimes wired. 😨

    • EileenH
      EileenH Sars77

      Posted

      It can't do anything for at least an hour and probably 2 - it has to be absorbed first and then be processed by the liver if it is prednisone. Many people manage to get to sleep and that's it.

  • liz12234
    liz12234 rocketman42

    Posted

    Well im not going to quibble about an hour or two, its working for me! regarding sleep i havnt slept properly for years, long before PMR reared its ugly head.
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