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side effects while tapering down prednisone

Posted , 11 users are following.

track
track

I was wondering if other people get the side effects I feel when lowering prednisone.  I am trying to lower 1 mg per month and am having trouble getting past 9mgs.  On my second day of tapering I get all fuzzy minded, very tired and do not feel like doing anything, this continues on for about 1 week, not improving, then I give up and up the dose to 9mgs again. I thought 1 mg would not make such a difference to my feelings.  The pain in legs and arms seem to be quite mild, not troubling me at all, just this feeling of malaise I cannot seem to shake off.

rolleyes

 

0 likes, 22 replies

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  • kitsalley
    kitsalley track

    Posted

    I don't have the energy I had before PMR.  Not sure if it's related to PMR or meds at this point.  Recently, bad headaches have been a problem and I am watching carefully for GCA but I don't think that's the problem.  Wonderfing if it's side effect of tapering.  I'm not fuzzy but often don't feel like doing anything but mostly because of the discomfort of the PMR.

  • FlipDover_Aust
    FlipDover_Aust track

    Posted

    Are you following the DSNS method we all talk about on here? 1mg is a LOT, especially when you get below 10mg.
    • track
      track FlipDover_Aust

      Posted

      Thank you for replying.  Could you please refresh for me the DSNS method, would appreciate it greatly.

      Hope you are keeping well,  thanks.   T

    • lodgerUK_NE
      lodgerUK_NE track

      Posted

      I sent you a PM to tell you where to get both Dead Slow and Stop and Tortoise and Hare  - both free of charge.
    • track
      track FlipDover_Aust

      Posted

      Hi,   I finally

      found the DSNS method and have started to follow it from yesterday, will let you know how I progress.

      Hope you are keeping well.      T

    • track
      track lodgerUK_NE

      Posted

      Hello,

      Thank you for the link to DSNS, have started on it as from yesterday, will let you know my progress.

      Thanks,   T

    • FlipDover_Aust
      FlipDover_Aust track

      Posted

      Please do.... no point sitting at home thinking you are the only person suffering through this. You are not!
  • debbie27473
    debbie27473 track

    Posted

    Hi. This is my third try at tapering. Like you I gave up after one week on my first two attempts to get below ten. Then my rheummy explained that it takes two weeks for the body to adjust to each new dose below 10mgs. I am now down to 3.5mgs a day! The fatigue is a nightmare and the discomfort in my arms/shoulders is pretty bad for that first two weeks but then settles a bit. Try to persevere as don't know about you but I've now been diagnosed with several other serious conditions due to the pred including, diabetes, copd and kidney disease. Very frightening so coming off pred has become the main priority. Good luck, Debbie x

     

    • Anhaga
      Anhaga debbie27473

      Posted

      Exactly.  The key really is being able to recognize the difference between pred withdrawal and PMR flare.  So far it's been pred withdrawal for me, but I continue to feel PMR "niggles" most of the time.  I agree it's important to get pred dose as low as possible, not least because we want our body to start producing its own hormones again.  I found fatigue at 7 and 5 mg very difficult to get through.  I'm still not nearly as energetic as I used to be, but the fatigue itself isn't as bad.  Although today for some reason I just want to lie around.  Could be the heat.  We aren't getting a chance to adapt.  We get days of record-breaking heat, then suddenly it cools off (had the coldest day on record for the date about a week ago!) and we have to get used to chilliness all over again.  Then another spell of hot weather.  Climate change.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada track

    Posted

    Hi,  I seems that getting past 10mg is a challenge for many.  I believe the pros say that an increase in symptoms over a few days means it's a flare, if the symptoms begin to ease after a few days or week it is withdrawl.  Maybe a smaller decrease would be helpful.

    Take a look at the 2 methods that Lodger has sent you the link for and try them.  I have had 3 flares in the past 3+ years.  The last one I went from 4mg (trying for 3 1/2) back to 10mg.  This time I have decreased even slower than the DSNS method and am at 5mg which I will stay at for  few months because my adrenals aren't kicking in yet. No one wants to be on prednisone but we need to manage the inflammation since it not only causes stiffness and pain but other more serious problems to our health.

    Fatigue is the worst symptom of PMR for me.  I have found it is important to listen to your body, slow down (which sometimes I think is a lesson this disorder is meant to teach us) and enjoy the many things you can do. 

    I hope you find the best method of decreasing that works for you soon.

    Hugs,

    Diana

    • track
      track Mrs.Mac-Canada

      Posted

      Thank you for your helpfull advice.   I have started the DSNS approach today and will let you know how I am travelling with it.

      Track   x

  • Flutterbie57
    Flutterbie57 track

    Posted

    I am stuck at 10mg and have tried 3 times to go down to 9mg. Pain returns. Last time I stayed on 9mg for 3 weeks till pain was boarderline unbearable. My blood tests show low figures. I figure I need to be at 10mg, possibly 11mg, but I am coping. My brain did clear some when I went back up to 10. I was in brain fog on 9mg
    • FlipDover_Aust
      FlipDover_Aust Flutterbie57

      Posted

      are you folowing the 'dead slow, nearly stop' regime? it can 'trick' the body into a lower dose.

    • Flutterbie57
      Flutterbie57 FlipDover_Aust

      Posted

      I will get Lodger to send it through to me again. I need to get my dose down because other problems are occuring.
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