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Tapering from 10 mg to 9 mg

Posted , 3 users are following.

kathy67492
kathy67492

hi...haven't posted for a while...couldn't get into the website...couldn't get my password via email!?!  Anyway...last communication I had a response from Eileen and lodger suggesting a "staggering" taper to try and get to 9 mg from 10 mg. I have tried on a few occasions to taper but was miserable. My doctor was going to start me on Methotrexate on February 1st. I have read about the methotrexate and was terrified. I started the tapering method suggested by lodger....and I am on Day 11!  Thank you for all the support! I wasn't sure how long I could stay on 10 mg because I don't know if the start of PMR is from the first symptom...or if you count from when you are really "disabled" with it...? 

1 like, 4 replies

4 Replies

  • EileenH
    EileenH kathy67492

    Posted

    I don't quite understand what you mean by "I wasn't sure how long I could stay on 10 mg because I don't know if the start of PMR is from the first symptom".

    How long you stay at a dose has little to do with how long you may or may not have had PMR before you started pred. The staying at 10mg is to allow your body to settle down at a moderate dose of pred that is managing the symptoms well (if you got that far!).

    I had PMR for 5 years before it totally disabled me and then another 6 months before any pred - but I don't think it made much difference to how long I stayed at 10mg in the end. I struggled to get below 10mg until I started using the slow tapering method. In the meantime I had had another major flare but since I was put onto my current form of pred I have reduced steadily using that plan and am now at 4mg. I tried 3mg but got some bicep pain and went back to 4mg. It is a low dose, that's fine and my GP is totally in agreement - she was always worried I was going too fast.

    So pleased to hear of another success story for megaslow reduction - the more the merrier! Hope it continues OK.

  • bob73443
    bob73443 kathy67492

    Posted

    Kathy,

    Yes, I have similar questions.  I've started on 20 MG, then went down to 15, and am not at 12.5 going down to 10 -- using the slow taper recommended here.  We're supposed to stay at 10 for 12 months, then begin the slow taper down from there.

    But is that 12 month hold from the time we got to 10MG, or from the time I started at 20? 

    Sorry, Kathy, I'm not answering your question.  I'm restating a question I had that's related.

    • EileenH
      EileenH bob73443

      Posted

      If you read the paper "Our approach to the diagnosis and treatment of PMR and GCA" where the reduction plan they use is described you will find a table with their instructions for PMR:

      15mg for 6 weeks 

      12.5mg for 6 weeks

      10mg for 52 weeks

      then reduce 1mg/month 

      The 15/12.5 times depends on the patient not having had any return of symptoms: somewhere in the text I think it says the 15mg is for 6 weeks or until symptoms have stabilised. 

      So the 10mg in their reduction scheme is a blanket period of a year.

      There are people who have reduced steadily, spending just a few months or even less at 10mg. I don't think I stayed at 10mg for anywhere near a full year when using my very slow reduction. When you are using the very slow method you will be able to notice if you start to show symptoms and can stop there immediately or go back a step to the last dose where you were fine. The important thing is to admit it straight away, not bury your head in the sand and hope it will go away! Just this morning a lady from Scotland said that before she'd ignored the signs until she had a proper flare, as bad as she had been before pred, and had had to return from 7mg to 10mg to get it under control. Using the slow reduction she realised immediately she was trying to get from 7 to 6mg that it wasn't going to work - and stopped straight away, saving herself both pain and the higher pred.

  • pat38625
    pat38625 kathy67492

    Posted

    Hi Kathy, welcome on board.  I am a newbie just diagnosed in November with PMR.  Someone will be along in a while and are better equipped to answer your queries.  It's a brilliant web site and I would have been lost without their support.  Also I have learned quite a bit.  Hang on in there.

    Pat

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