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reduction steriods feel ill

Posted , 12 users are following.

julia85224
julia85224

Hi all,

I am still very new to pmr, and could do with some advise.

This week is my second attempt to reduce steroids from 15mg to 12.5, four days I , I feel like I have been hit by a truck, tearful and shaking.

Will this pass? and will it take long.

Still in denial, so hate this.

Would appreciate any thoughts.

Julia

0 likes, 52 replies

52 Replies

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  • diana21296
    diana21296 julia85224

    Posted

    Well I am on 15.5 mg now for 3 weeks and on Sunday go to Scotland for 3 nights so stay on this dose till I get back before trying to drop by 1mg or even 0.5mg  If I tried to drop more I would feel really ill and achy with bad back ache and have a bad quality of life.    So be patient, don't try and rush as it won't work! And never overdo things.
  • sharon35553
    sharon35553 julia85224

    Posted

    Hi Julia,

    I have been on prednisone since Feb of this year and when my Rhuemy tried to taper me for the very first time I was in so much pain almost immediately that he had to put me back up to the original 15 mil. I now am at 10 mil at 5am and 5 mil at 5pm and feeling 100% painfree. I go to Dr this Thurs. and not sure if he will try to taper again. I havent had any bad side effects other than some eye strain and honestly Im so scared of the taper because I dont want the pain back. It is very scary and I understand how you feel but maybe you were not ready to be tapered. The best way to find out is to go back to the dose where you felt good like I did.  As a matter of fact my Dr who specializes in PMR/GCA told me that if I developed any major headache  to increase my dose to 40 mil on my own, thats because I also have mild GCA which may or may require a higher dose but thank goodness I have not had to do this.

    Good luck,

    Sharon

    • julia85224
      julia85224 sharon35553

      Posted

      Hi,

      Thank you for you're reply,

      I think the who pmr thing is quite scary, and as I am still in denial I don't like it.

      Reducing I feel is trial and error, plus the the amazing support and guidance you get from the lovely people on this forum.

      Feel good soon.

    • Anhaga
      Anhaga julia85224

      Posted

      PMR and pred  are scary, but they are not as scary as some other things.  Managing pred is a challenge, but it's better than untreated PMR and GCA.  And PMR is not known to kill us.   The early days and weeks are the worst as we come to grips with the new unwanted normal.  But it does get better.  Most people do eventually recover completely.  You are not likely to hear from them on this forum because after they are better nearly all of them move on - a few kind souls stay on to help out people like you and me.  But there is a thread especially created for people who have achieved zero pred to post their stories and encourage those of us still in the trenches.  

      https://patient.info/forums/discuss/zero-prednisone-discussion-450915

    • julia85224
      julia85224 Anhaga

      Posted

      Hi,

      Thank you,

      you are so positive, and lift my spirits,

      I will look at the link in a bit.

      Hope you are well.

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