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Not joining the zero club

Posted , 16 users are following.

Pamros
Pamros

I'm so diasppointed, managed to get down to 1 mg pred, but two weeks in and it has all come back. GP says try 3mg for two weeks to see how it goes. Oh well, keep trying. Could be a lot worse I know. Just felt like sharing, as nobody else understands. sad

2 likes, 31 replies

31 Replies

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  • Anhaga
    Anhaga Pamros

    Posted

    That is disappointing.  Have you been looking after yourself?  Apparently it takes months after the last dose of pred to be back to normal re adrenal function, etc., so you probably need to be even more careful not to overdo things for a while.  Hopefully the 3 mg will do the trick and you'll be back on track soon!  (It is pretty hard not to overdo things when you feel well, though, isn't it?)
  • margaret22251
    margaret22251 Pamros

    Posted

    i am trying to reduce to 8mg from 8.5mg and i am having the same problem, keep going tho, its a long haul but with luck tou will do it. x Mags
  • Gymjen
    Gymjen Pamros

    Posted

    Really feel for you,only thoughs of us who have this rotten disease understand.I got to 6 this last December, overdid it, family from Johannesbug with me for 3 weeks. All the pains  and stiffness came back. GP put back on 15.  Back now on 6 andso far so good, but not advanced in a year.  This year got to see a rheumy,Gp bringing me down too fast,Drop 1 mg every 3 weeks. Rheumy put me on 7 for 4 weeks ,then 7/6 on alternate days for 4 weeks. Now 6 for 4 weeks ,then 6/ 5 and so on.

    will be approx a year before I get really low, but I am coping well with this regime.

     

  • EileenH
    EileenH Pamros

    Posted

    Hi Pam - I'm sorry you are so disappointed and I wish I could give you a hug but they don't give us a hug smiley on here! You'll have to come over to the NE England forum where we do  ;-)

    The concept of Zero Club is something I struggle with a bit - it isn't something you can "keep trying" to get to. Nothing you can do will make a difference to PMR, it came when it liked and it will go away again when it likes. You haven't "failed" in any way - the underlying disorder is still there, wreaking its havoc, and so you you still need a tiny bit of pred. Even 3mg is a tiny dose - I haven't got there yet, I was delighted to manage to get to 5mg after 6 years, then 4mg just holds it, I am trying for 3mg again but if it doesn't go I shall go back to 4mg and be grateful.

    Are you doing the "Dead slow approach"? From one dose to the next overnight at this stage is really too much.

  • macas02
    macas02 Pamros

    Posted

    I know this disappointment I too reached 1mg and ended up having prednisilone increased to 10mg. I have been up and down so much, its nearly 6 years now

    I am taking 1 1/2 mg at present, I am pain free but have very stiff legs.

    Still a problem up and down stairs. My GP has been great and he hopes I will be off the steroids by end of the year.

    • Anhaga
      Anhaga macas02

      Posted

      What does your GP say about side effects at your current really low dose?  How long have you been at 1.5?  It almost seems like you might want to stay there for a while as you still have some problems especially if side effects are not a problem at that level.  I don't really know, would be interested to hear how it goes.
    • macas02
      macas02 Anhaga

      Posted

      I haven't spoken to GP since I reduced, I am only a week on 1.5 and I have reduced very slowly.My biggest problem is that in the last 2 years I have been diagnosed with PAF(atrial fibrillation) this has been miserable, the medication has made me feel worse than the AFib. I am now on a new medication which I am tolerating, 

      I will try on the 1.5 for a little longer and see how it goes. I will let you know how it goes.

      Thank you for your interest.

      Mary.

    • Anhaga
      Anhaga macas02

      Posted

      All the best.  It's not an easy journey, is it?
    • EileenH
      EileenH macas02

      Posted

      I have a/f too, probably due to the autoimmune part of PMR the cardiologist thinks. The medication I'm on has been fine - 2 BP meds at lower doses and an anti-arrythmic often enough per day to avoid episodes. Lots of people have problems with beta-blockers, maybe the 2 different approaches avoids that. I'm not in the UK though - often quite different here. I do hope they find you something better.
    • lodgerUK_NE
      lodgerUK_NE macas02

      Posted

      I have A/F as well and when first diagnosed and given the beta-blocker, it just did not suit me, they tried a lower strength and still no go.  The cardio guy gave me another one but I had problems taking this in the morning - just could not get going  - he switched it till 6pm at night and lo and behold no more problems except visiting the rat poison (which no longer works on rats) clinic once in three months now.

      A/F is the most common heart problem in older people and guess what, they can do 90% of helping hearts,  A/F belongs in the 10%.

       

    • macas02
      macas02 EileenH

      Posted

      I have had problems with medication. .

      It appears the biggest risk with AF is having a stroke, so I am now on one of the new blood thinners, plus( 3 others drugs) this is the second try, the first one caused be to bleed possible from my throat!! not a good experience. But i am now  tolerating the medicine quite well.

      I am hoping to be off the steriods by the end of this year.

       

    • EileenH
      EileenH macas02

      Posted

      I'm on Sintrom, bit like warfarin, which is the standard here. I was offered one of the new ones - I'd declined before she'd finished the name of it! I'll think about it once they have ironed out the problems - and she agreed with me. 

      I'm sure you are hoping to be off pred by the end of the year but don't let that hope blind you to the possibility you still need a tiny bit. Ignoring it can lead to going back up quite a way so don't risk it.

      Good luck. 

    • macas02
      macas02 EileenH

      Posted

      Thank you Eileen, I won't risk it, I would prefer to stay where I am on1.5mg

      but Doctor thinks its best I try to come off..

      My blood thinner is Apixaban. It was Rivaroxaban that caused the bleed.

      The Cardios would prefer I take Warfarin because it is cost effective!! and I wan't popular when I refused.

    • EileenH
      EileenH macas02

      Posted

      My logic is that there is an antidote for the warfarin-type ones if I were to be in an accident. There isn't for the new ones. Are they now checking INR occasionally? They discovered that it was advisable since the INR could go sky-high after all. That was the USP chucked out - they were approved because of removing that constraint - of having to go to clinic all the time. We wander along to the hospital together once a month and pick up our own results. David has always done his own, I know what to do with mine but I do ask my GP to keep her from feeling left out ;-)
    • macas02
      macas02 EileenH

      Posted

      No INR testing but blood tests for electrolytes? so far I have had only one, another one due in the next month. 
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