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Was told to reduce pred ASAP by dr.

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pat38625
pat38625

Hi, am not long back from drs.  New dr., my own gp has left.  I started pred on 12th November last at 20mg pred.  I have been reducing very gradual from that period and was at 10mg on 1st June.  Was told by  new gp today that I must reduce 1mg per month.  I was not a happy bunny so we agreed that I would reduce 1mg every 6 weeks instead of 1 month.  Apparantely Consultant Rheumy who is "an expert"  and the medical profession knows best and (my words) I should do as I'm told.  I am fit to be tied.  Had PMR undiagnosed this time last year or maybe before that but was only diagnosed on 12th November and have had no flares so far.  All comments welcome and Thank you in advance.

0 likes, 14 replies

14 Replies

  • tavidu
    tavidu pat38625

    Posted

    Hi Pat

    Firstly, congratulations on reducing from 20mg down to 10mg successfully in little over 6 months, something most of us just dream of.

    If I were you I would heed what the "experts" advise and go by your own instinct. So as not to undo all the work you have done remember the rule is slow from 10 onwards. I would even consider 0.5mg to start with rather than a full 1mg. Good luck whatever you decide. Dave

    • pat38625
      pat38625 tavidu

      Posted

      Hi Dave, thank you for your message.  I wanted to go down .5 at a time but she insisted 1mg.  My other gp would have let me manage on my own.  The one thing I don't want is the yo yo effect.  I am going to try 1mg at a time.  She did say if I get a flare to go up 1mg.  I am going to try the DSAS way I think.  Thanks again.
  • tina-uk_cwall
    tina-uk_cwall pat38625

    Posted

    Hi Pat, I think you've reduced brilliantly. You're down to 10mgs in less than a year so your GP should be MORE than pleased with your progress. Firstly, I wouldn't reduce by 1mgs per month, it's just on the boundary of the 10% and that percentage will increase per 1mgs reduction.

    inwould definately only reduce by .5 and reduce either, 1 day old dose, 1 day new dose for 1 month then onto the new dose for 1 month or follow Eileen's dead slow and almost stop method. Sod them! You are quite happy to reduce but it's the way they want you to reduce that's in question. Personally I reduce using Eileen's method, and if I was ever questioned I'd just make up a load of lies as to why I did it the way I choose then end on the line. "However, given ALL that I've told you i still managed to reduce, which is after all your current aim for me".

    because you've managed to negotiate a 6 week time spam, you'll only be a tad out of their expected reduction plan. Good luck, regards, christina 

    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Hi Christina thank you so much for your message.  You are right, I do want to reduce (who in their right mind wouldn't want to) it's the way they want me to reduce that's in question.  Thank you soo much.  I will do Eileens DSAS method I think.  I am not reducing anything until next Monday.  I like to start things on a Monday lol.  
  • lodgerUK_NE
    lodgerUK_NE pat38625

    Posted

    These two postings have been copied from another thread.

    Couple of questions - what dosage did you start at and when?   There is a reductionplan here https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 Best of luck - don't rust it!

     

    Follow the link Oregonhohn has provided, the email the northeast

    Then once you get to that thread.

    Subject heading Reduction Plans.   two plans will then be forwarded to you.  One Eileens and one devised by Lodger.   Both of us worked on the original plan from Ragnar (who lives in Sweden) and we tweaked them and found one or t'other worked.

     

    • pat38625
      pat38625 lodgerUK_NE

      Posted

      Hi Lodger, thanks for your message.  I started on 12th November past on 20mg pred and so far am at 10mg without any flares.  Am going to get the link you sent and try to do it that way.  Fingers crossed and will keep everyone informed.  Thanks again.  Pat
  • carol20979
    carol20979 pat38625

    Posted

    I also had my rhuemy tell me to reduce 1 mg a month but everyone who  reponded on this site said that was to aggressive,I am using the dead slow method so far no flares.There are many others on this forum that can give you more info best of luck Pat.
    • pat38625
      pat38625 carol20979

      Posted

      Thank you.  I am not changing anything until next Monday.  I don't know whether to try and go down 1mg every 6 weeks instead of 4 weeks, or do the DSAS method.  I have a note of it in a wee book but I cannot get my head reound the 1day new dose, 6 days old dose, 1 day new dose, 5 days old dose etc., what happens the days in between.  I know I am getting this all wrong, brain fog all day and yesterday.  
    • tina-uk_cwall
      tina-uk_cwall pat38625

      Posted

      Hello Pat, the dead slow and almost stop method is a roll over regime (loop).

      so the way I do it is to get a calendar, and write up all the doses onto it, so for example you want to start on Monday, so Monday new dose, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday, old dose, then Monday new dose, Tuesday, Wednesday, Thursday, Friday, Saturday old dose, then Sunday, new dose, Tuesday, Wednesday, Thursday, Friday old dose, Saturday new dose, etc etc. 

      so 1 day new dose 6 days old dose

      1 day new dose 5 days old dose

      1 day new dose 4 days old dose

      1 day new dose 3 days old dose

      1 day new dose 2 days old dose

      1 day new dose 1 day old dose

      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

      then every day new dose

      or you could simply try 1 day new dose 1 day old dose. I sometimes use this method but only reduce by .5. You could do this for 4 weeks then reduce by .5 for a further 4 weeks, this way you've reduced a whole 1mg in 8 weeks, so you're only 2 weeks over the 6 week period specified by the Dr.

      personally when I dropped by 1 mg I had a flare because the drop was a bit too much for me and I think to drop by .5 is small enough for your body to get use to it better. Regards, Christina 

    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Thank you Christina, my head is pickled with trying to figure out what is best for me.  This new gp is compromising by allowing me to reduce over a 6 week period rather than 4 week as Consultant Rheumy suggested this is what he wants me to do.  I am going to leave it until nearer the weekend and then make my decision.  This new gp is unapproachable, and I don't want to change drs - I haven't the energy any more.  

      I reduced from 20mg pred by 2.5mg each time  and am now on 10mg with no flares, weakness and fatigue yes, but no flares as yet.  I may and I mean may be lucky enough to get away with reducing 1mg every 6 weeks.  We shall see but thank you so much Christina for explaining it to me.  You are a gem.

    • linda17563
      linda17563 pat38625

      Posted

      Be careful, it`s under 10mg when the flares can creep in....I have a rheumy like your doctor,frown that said 1 mg every month...it dosen`t suit me, so it`s been .5mg every 6 weeks...when I go back in August she wants me to be on 10mg....don`t think I shall achieve that...but do I care...no, it`s my pain and body, so I`m afraid I will be telling a little lie just to satisfy her....I refuse to be bullied at my age!wink
    • pat38625
      pat38625 linda17563

      Posted

      Hi Linda and thanks for messaging me.  I know that it is a dodgy time when you're at 10mg and hoping to reduce.  My dr. (she's new to the practice) is following rheumys advice.  He wants me down 1mg a month but I told her no, 1mg every 6 weeks, she won't bend on .5 mg every 6 weeks which I wanted,  So she is compromising, she also said any sign of a flare to go up again.  I'm starting the reduction plan Monday coming.  Thanks again Linda.
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