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Tapering

Posted , 11 users are following.

paula21528
paula21528

Hi I was just wondering as to continue with the tapering I started off with 15mg of prednisolone tried to taper to 121/2 ended up stiff and aches then for the past week I've been trying to come down to 10 mg Marco feel like I gone back to square one I can hardly move for the pain in lower back my hips are heuristics as are my shoulders and neck should I keep on trying with the 10 mg or should I go up to 15 as that's the last time I was comfortable thank you in advance

0 likes, 34 replies

34 Replies

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  • donna25417
    donna25417 paula21528

    Posted

    Hi Paula I had to go back up to 15mg one other time for about a month then was able to reduce to the ten successfully now after a month of change to my diet of no dairy no sugar the two man contributors that feed inflammation I have been down to 5mg for a week now and feeling very little pain now. Not sure how long you have been on the 15mg I was since last August not that long compared to so many others. 
    • paula21528
      paula21528

      Posted

      I was on 15 mg since 14 Feb this year was on them for 3 weeks then went to 121/2 on 4 April then been try to get down to 10 this.last week been too soon I realise that I should have stuck to 121/2 a bit longer but I am trying get down see what my body can manage with well it definitely can't cope with 10 mg silly me gone up to 121/2 again see how I get along with that dosage

    • Anhaga
      Anhaga paula21528

      Posted

      Make sure your symptoms are properly controlled again before attempting to taper again.  Then try tapering only 1 mg at a time.  As Eileen has said to us more than once, "It isn't slow if it works".  I know we all want to get our pred dose down asap, but we end up with a higher lifetime dose if we get flares and have to start over again.  It can be harder to deal with inflammation after a flare, sometimes, so best to go very slowly and stay feeling as well as you can.  

    • Anhaga
      Anhaga

      Posted

      And you have only been on pred for about nine or ten weeks?  Early days yet, quite safe to stay at 12 or 13 or so until your symptoms are really under control.  You will find your lowest possible dose eventually, but it will take months, not weeks, to find it. By going very slowly you are most likely to be successful in finding that desired lowest dose.
    • paula21528
      paula21528 Anhaga

      Posted

      Thank you anhaga your right it's early days it was the doc who told me to do it I really don't think they know what it's like this horrible pmr I'm following Eileen advice on the go slow tapering thank you for your reply

  • veronica81435
    veronica81435 paula21528

    Posted

    Hi Paula , I changed my diet and everything and could not get down to 10mg . Lost 2 stone and still ache like crazy . Be carful with dieting as you need to get correct vitamins and minerals  . Talk to dietician if you want to go that way. I think if the disease is really active in you it don't matter what you do your get inflammation symptoms. Maybe talk with your Dr about putting you on a drug to go along with the prednisolone . But don't suffer talk to a Dr. Best wishes from  V  . 

    • paula21528
      paula21528 veronica81435

      Posted

      Thank you veronica I'm not trying to diet it's the other way I'm trying to put weight on as I've lost a few pounds since the per symptoms started and that was last summer . I'm going to follow Eileens advice on the dead slow tapering but thank you for your advice

  • nick67069
    nick67069 paula21528

    Posted

    If it does not feel right, then you are probably reducing too fast. I would stay on 12.5 for a while and then try to reduce in smaller steps, less then 10% of the dose. At this level, it would be about 1mg.  Search for DSNS (slow tappering method) it will help you.
  • Nefret
    Nefret paula21528

    Posted

    If, at any dose, you are still getting symptoms, then DON'T keep reducing.  Stay on any one dose until you are comfortable and then think about reducing.  Forcing reductions always ends in tears, you are not keeping the inflammation down enough for it to help.  Taking too little Pred just means you are getting all the downsides but none of the benefits.

    See your doctor asap, I think you really need to go back to the 15mg you started on and begin again.  Even at 15mg, you may find it takes longer to calm the inflammation than it originally took.

  • Daniel1143
    Daniel1143 paula21528

    Posted

    Paula, listen to your body.  It will tell you when to taper and when you've tapered too fast.  Seems many of us learn this the hard way. I would proffer that you are ahead of the curve, and should slow down.  You cannot taper any faster than your PMR let's you.  You cannot push it.  PMR has a mind of its own, and everyone is different.  

    You may may want to read up on the dead slow tapering method that EileenH prescribes and many of us have successfully followed.

    • paula21528
      paula21528 Daniel1143

      Posted

      Thank you Daniel I've just read Eileen slow tapering I'm going to follow that way of doing it thank you for your advice

  • EileenH
    EileenH paula21528

    Posted

    Ask your doctor to let you go back to 15mg - and once the symptoms are under control again try reducing just 1mg at a time. No reduction should be more than 10% of the current dose - and for many even that is too much. And you should NEVER reduce if you have symptoms. They must stabilise to the level they were with your starting dose - that is always your guideline: Do I feel as well as I did originally on the highest dose of pred?

    We are ALL trying to find the lowest dose we can manage with. But you will only get there when your body and the PMR are good and ready. When you try to force it all that happens is that you end up back at the beginning. You are back at a higher dose and have to reduce all over again - and you have not achieved what you were aiming for, a lower dose, so it was all rather pointless. As Daniel says most people find that out the hard way - we oldies have been there, read the book, got the t-shirt, watched the film. We do try to explain it but very few believe us first time round!!!!

    The slow method Daniel mentions is here:

    https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

    • paula21528
      paula21528 EileenH

      Posted

      Thank you Eileen she told me after 3weeks To go Down to 121/2 mg then 3 weeks at 121/2 mg go down to 91/2 mg my body can't cope so I'm going back to 15 mg I was ok on that dose so I'm going back to that thank you for your help

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