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Reducing

Posted , 11 users are following.

margaret22251
margaret22251

I went to see the rhymi on Friday and was told to reduce from 10mg to 7.5mg in one go despite the pain in my neck. Shoulders etc.

well I did it and boy did I know about it, was up all night with pain in my right leg, it looked as if something was creeping up my leg if looked as if it was pulsing and then I had pain in my right temple for ten mins.

so I am reducing by one mg to see how that goes.if it's no better I shall stop until I see him in three months.

he said my bloods were normal now, so it should be OK to reduce. I thought the theory for reducing was 1percenr of the dose you were on. 

I am am going also for another ct scan for the nodule which is at the bottom of my left lung.

why I ask myself do these doctors not listen to us, as we know what our bodies are like.

i refused to have my methoxtrate increased to 25mg and he was not happy, 

i take magnesium,vit d, folic acid , can I ask anyone should I be taking anything else to help cramps"

regarding the the episode with my feet I had the electrode test , and he is sending me to see a podiatrist as he thinks the inflamation is causing it, also requesting I have new shoes made as the ones I have are too tight for me across my feet.

 

0 likes, 12 replies

12 Replies

  • diana21296
    diana21296 margaret22251

    Posted

    Astounding that a so called professional could taper you so fast which is asking for trouble going down from 10.   I manage my own taper and under 10 drop half a mg every 8 weeks as can't do it any quicker.   I never have a flare as it's so tiny but it is also successful and I don't care how long it takes as quality of live is the most important thing to me.  Good luck and slowly but surely.  

  • EileenH
    EileenH margaret22251

    Posted

    What on earth makes them think a patients still with PMR-type pain should reduce at all? And all the recommendations suggest that below 10mg the reductions should be no more than 1mg at a time.

    I despair sometimes, I really do...

    • BettyE
      BettyE EileenH

      Posted

      It does seem as though there are many professionals, not just medics, who are slow to realise that we are many of us better informed than they are capable of imagining thanks to the benefits of the internet and the ease of information exchange. Not much different from the perceived threat, in some cultures, of educating girls and in the mediaeval church of educating anyone! 

      Many of us have been fortunate in having doctors who take the trouble to keep up and who listen to their patients.

    • EileenH
      EileenH BettyE

      Posted

      I suppose a lot of us are so much better informed too because we are prepared to stand up and say I'd like to try "my" - or even have the confidence to try it first and report when it works. Mind you Betty - there wasn't a lot of culture of educating girls in the place I grew up nor in my first workplace in Dundee where I asked to go on training courses and was told that that was for the guys "you'll just get married and have kids and leave..." And there was the job in Aberdeen where I was prime candidate - until they saw my wedding ring. Nothing I could do about it in those days either.

  • Michdonn
    Michdonn margaret22251

    Posted

    Margaret, I will not reduce at all if I have any PMR pain. And since I had a very bad flare, reducing from 10 mg I reduced by a half mg. I know that is very conservative, but it is working for me. My Rheumy has finally given up on trying to direct my tapering and I am taking the slow and easy does it. Good luck do not let them bully you listen to your body. Stay positive and try to smile. ☺️
  • Anhaga
    Anhaga margaret22251

    Posted

    As PMRpro has said many times:  It isn't slow if it works".  Your total steroid intake will be less if you taper slowly and avoid flares which mean you have to increase the dose.  Why not try the dead slow method to taper that 1 mg?  https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    If it works, then you try another 1 mg.  I started tapering by .5 mg after 8 mg, but some people start sooner if they need to.  

  • reggie92967
    reggie92967 margaret22251

    Posted

    Why can't these doctors realize how it is so necessary to little by little wean people down on prednisone ? My PCP will only reduce 1/2 mg. every 1-2-weeks at a time, until at wanted lower dose. I've experienced lowering too quickly & it was horrible. Doesn't it seem that these doctors, especially these Rhuematologist, should know by now. If they take chances by reducing too quickly, they must have many, many patients that have complained to them ? I don't understand, maybe they need to be put on 20 or 30mg. trial of prednisone & then suddenly be made to drop to 15 or 10mg. in one day, so they know how it feels. I just hear if so many people being reduced too quickly, it baffles me. Reggie A.

    • Michdonn
      Michdonn reggie92967

      Posted

      Reggie, you are 100% correct. I am one who was being rushed off Pred and had a terrible flare. Then my Rheumy would not prescribe the necessary Pred to combat the inflammation. I do wish she could suffer just one day like I did, to understand the consequences of her actions and inactions. Thank to the forum I now am in control of my PMR journey. Thinking positive and smiling. ☺️
    • ptolemy
      ptolemy reggie92967

      Posted

      I do so agree. My rheumie said I should expect a few flares while reducing. If only he knew what they were like.
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