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Reduced pred one half mg day 4 still feel awful how long will this last?

Posted , 9 users are following.

carol20979
carol20979

Well I am on day four of reduction still feel the same weird heavy feeling in head as day progresses it moves to my legs also not sleeping well,any ideas on how long this will last?I just can't seem to shake this off.

1 like, 20 replies

20 Replies

  • pamela52328
    pamela52328 carol20979

    Posted

    Suggest you go back to Doctors sounds like you need to go back up. Sleep paterns are altered as it is a side effect of the steroid.

     

    • carol20979
      carol20979 pamela52328

      Posted

      The doctor wanted me to reduce 1mg a month but many people on this site said that was very agressive so I chose to go down in 1half mg instead.It has been 4 days I will stick with it 
  • linda82701_USA
    linda82701_USA carol20979

    Posted

    When I reduced from 17.5 mg to 15 mg, it took me about 14 days to feel better. Don't know if this is what others have experienced. Am a newbie with all of this. Wishing you the best!
    • carol20979
      carol20979 linda82701_USA

      Posted

      Thank you Linda.Iam new to this also this is my first reduction been on 10 mg for 2 months. I thought going on them was bad coming off is going to be worse
  • andrea93419
    andrea93419 carol20979

    Posted

    Carol,, I was a good 7 to 10 days of weird symptoms, physically and mentally!! Stick with it don't increase the Pred it will get better.

    Andrea

    • carol20979
      carol20979 andrea93419

      Posted

      Thank you I had no idea I would feel like this why did't the doctor give me a heads up. would have been nice 7 to 10 days is this every time you reduce hope not.
    • linda82701_USA
      linda82701_USA carol20979

      Posted

      My doctor didn't tell me either.  Just said that prednisone could cause side effects, told me some of them.  But until I experienced them, I did not fully understand.
    • tina-uk_cwall
      tina-uk_cwall carol20979

      Posted

      Hello carol, has any pain returned following this reduction? Or is this symptom sort of non related. I ask because as others have said this could simply be a new side effect that will hopefully reduce as your preds reduce.

      imassume you have reduced from 10 daily to 9.5 daily. Is this correct? Because for your next reduction you could try reducing slower and less still. You could try a week, two weeks, three weeks or four weeks of 1 day old dose, next day new dose, in this case it would be 1 day 10mgs, next day 9.5 and keep going like that for any of the time spans mentioned, then go onto everyday new dose for six weeks then repeat the regime for the next reduction.or you could try 1 day new dose, (here I will use 9.5 as an example, then 6 days old dose, (for this example it's 10), then 1 day new dose, then 5 days old dose, then 1 day new dose, then 4 days old dose, keep going in this fashion then you repeat the principle backwards so that you eventually end up taking 6 days new dose 1 day old. Then stay on your new dose for a month to six weeks and repeat the regime. Now both these examples are really slow reduction methods with the smallest of dose reduction. Provided there is no inflamation that is bigger than the amount of preds that you are taking all should be well. It's about conning your body, letting it think it's getting what it use to get but it's not really. All the best, christina 

    • andrea93419
      andrea93419 carol20979

      Posted

      Hi Carol, I've only reduced twice, the first time from 20mg to 17.5mg, and my goodness is was like a psycho!!!!!,, plus aches but nothing like the untreated PMR, then reduced to 15mg,,, I think the symptoms didn't last for so long! Waiting on my rheumatologist to give the ok for a further reduction! 

      All the very best! Andrea

  • Judygirl
    Judygirl carol20979

    Posted

    Be patient, I am down to 4 mgs. and things do

    change, in the meantime, try not to zone in on

    discomfort which causes stress and makes

    things worse, when I began with PMR I thought

    my world had ended and here I am still perking

    along, still a bit stiff and very tired, but the birds

    are singing and we had rain in this terrible drought

    which made everyone feel better - look on the

    bright side.  Love to all. 

     

  • EileenH
    EileenH carol20979

    Posted

    Did you go from every day of the old dose to every day new dose straight off? The reduction described in the replies section this thread was designed to avoid these problems:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    The body finds it difficult to adjust to a different dose - this scheme introduces it one day at a time so the body gets usesd to it slowly.

    But eventually you will get to a dose that is too low to manage the symptoms - the reductions is not a relentless reduction to zero - you are looking for the lowest dose that  works to manage the symptoms. You may have got there - not this dose, but the previous one.

    • carol20979
      carol20979

      Posted

      I just upped my dose to 10 and will see how that goes and try the every other day for a time this is really trial and error not easy as the doc made it seem.I really don't have alot of faith in him might be better off with my GP
    • Oregonjohn-UK
      Oregonjohn-UK carol20979

      Posted

      Carol - no not a fast as that or you will be in trouble!

      1 day new dose, 6 days old dose

      1 day new dose, 5 days old dose

      1 day new dose, 4 days old dose - can stop here!

      ___________________________________________

      1 day new dose, 3 days old dose

      1 day new dose, 2 days old dose

      1 day new dose, 1 day old dose - or here!

      ___________________________________________

      1 day old dose, 2 days new dose

      1 day old dose, 3 days new dose

      1 day old dose, 4 days new dose

      1 day old dose, 5 days new dose

      1 day old dose, 6 days new dose

    • carol20979
      carol20979 Oregonjohn-UK

      Posted

      Thanks a lot makes more sense than what my doctor said he just wants to hurry and get me off of it. will try this for sure I am really shocked at how a seemingly tiny change can cause havoc with your system.I am so blessed   that there are those who have been through this and are willing to share information as you probably guessed i am new to this and especially to reduction you are my hero Oregonjohn
    • EileenH
      EileenH Oregonjohn-UK

      Posted

      Didn't you mean "can START here" opposite 1 day new, 4 days old? That's what I meant originally at least - I start particularly slowly because I do suffer for the first few times but lots of people start at the 4 day old level with no problems.

      Starting at the alternate days old/new is where the other scheme that is doing the rounds starts - but it is too much for me to go straight to alternating the dose.

      And you can stop at any point - wherever it is you are saving a few mgs. 

    • EileenH
      EileenH carol20979

      Posted

      Hurrying to get off pred is the one thing you CANNOT do in PMR or GCA. Top experts say that even being conservative you need to look at at least 2 years use of pred and for well over half the patients it will take much longer than that - some textbooks say an average of 5 years. It does seem to go more smoothly and, as a result, faster if you use this slow reduction pattern because there are no flares forcing a return to a higher dose and starting over again - as is explained in that link I gave you, when you reduce in too large a step you induce something called "steroid withdrawal rheumatism" but you often can't tell whether it is that or the PMR returning. The bigger the step the longer it takes to settle down - by which time the patient or doctor have assumed it is a flare and gone back on themselves. Walking from one end of the street to the other is quick if you always keep going forward - but if you keep doubling back it takes much longer.
    • Oregonjohn-UK
      Oregonjohn-UK carol20979

      Posted

      Must get my eyes sortede and check before hitting enter:

      1 day new dose, 6 days old dose

      2 day new dose, 5 days old dose

      3 day new dose, 4 days old dose - can stop here!

      ___________________________________________

      4 day new dose, 3 days old dose

      5 day new dose, 2 days old dose

      6 day new dose, 1 day old dose - or here!

      Sorry!!

    • Oregonjohn-UK
      Oregonjohn-UK EileenH

      Posted

      Was doing a cut and paste from the first line and forgot to change the first number after pasting - hope I've not confused anyone - thanks Eileen!!
    • EileenH
      EileenH Oregonjohn-UK

      Posted

      Oh yes - done that SOOOOO often! Cut and paste is a wonderful thing - like computers - until they go wrong!

      Oh for an edit facility - I shall be singing that as I shuffle off this mortal coil...

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