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Grrrrrr. I could spit!

Posted , 10 users are following.

constance.de
constance.de

I have been doing so well lately, bloods were in the 'normal' range (18-20 ESR).  Then, for the third time (or was it the fourth?!), I had reduced to 5 mg Pred.  Then, BANG, once again a flare - after four years.  Up went ESR and CPR.

I think in future I will skip 5 mgs and go straight to 4!  Good idea does anyone think😏😏.  I'm getting quite paranoid about the number 5!

2 likes, 11 replies

11 Replies

  • liz12234
    liz12234 constance.de

    Posted

    Thats a shame, do you have any other symptoms besides bloods and how long are you staying on each dose, im dreading 7mg for some reason go to 7 1/2 tomorrow. Do hope you feel better soon and thanks to all those that liked my good news ab my good Dr!
  • pauline36422
    pauline36422 constance.de

    Posted

    constance i dont think its a good idea th skip. cos it sounds to me  your not ready

    so stay on  6 and go down quater mg   at a time. take it over 6 weeks each quater.

    solw i know  but its working for me.

     

    • constance.de
      constance.de pauline36422

      Posted

      It was a joke Pauline.  I'm an old hat at this, I've been up and down for over a year now.  I'll have to stay on 7mgs for a couple of months now before I try to reduce again.
  • julian.
    julian. constance.de

    Posted

    I think the problem is that we have five fingers on each hand. Mathematically its a prime number so can't be divided by anything other than one or five. The silly little pred tablets come in fives or ones.

    So its sort of pre-ordained that the easiest dose to take, one 5mg tablet per day, should have side effects, like everything else to do with this confounded condition.

    Instead of missing out five next time maybe consider cutting one 5mg tablet in half and taking both halves.

    The frustration of trying to line the blunt axe up on the silly little tablets and watching them crumble with even the lightest blow should take one's mind of the flare.

    Apart from that I have only sympathy to offer. To be taken daily with a glass of fine German Spätburgunder.

    Caution. Drinking the vino has been known to effect the accuracy of the axe.

    • constance.de
      constance.de julian.

      Posted

      3rd paragraph!  What an excellent idea.  Trust you to come up with it!😃👍
    • gaenor38609
      gaenor38609 julian.

      Posted

      Pred comes in 25mg, 10mg, 5mg, 2.5mg and 1mg. I have had all of them in my time on these little buggers. I started off on 60 mg reduced down to 8mg had a major flair up back up to 60mg down to 15mg back to 30mg now down to 12.5mg dread going any lower but next week I have to get down to 10mg but this time I am going to take things so so slow. I have GCA, PMR and now Diabetes plus other problems. However i can still laugh and can still walk unlike my sister who had a masive stroke 2 years ago because her Dr didn't spot the problem. So I should be so grateful that my Dr was so much on the ball. Mind you it doesn't stop me getting depressed and grumble about my lot sometimes.
    • elizabeth20640
      elizabeth20640 gaenor38609

      Posted

      Hi does your sister have PMR and GCA . Just wondering cause I have PMR and GCA and have come down from 80mg pred but my brother has PMR
    • gaenor38609
      gaenor38609 elizabeth20640

      Posted

      It was the GCA and PMR that caused the massive stroke but her Dr hadn't recognised the symptoms. She could have been saved from having the stroke. now she is paralised and in bed in a nursing home unable to do anything for herself. I am lucky that my Dr sent me straight to the hospital and I was put on 60mg of Pred. I am slowly getting my life back together again but my sister never will. I have another sister with PMR and she is now on just 1mg of pred. I will get there someday.
    • julian.
      julian. gaenor38609

      Posted

      its like eating a chocolate elephant, one bite at a time, Though not quite as enjoyable.

      Of course you'll get there.

       

    • constance.de
      constance.de gaenor38609

      Posted

      I never realized it ran in families to that extent - that's frightening!😳

      Thank goodness you were caught in time.

      Great that you can keep positive with that background.  Keep it up!

      All the best.  Have a pain free Christmas, and all the luck in the world for 2016.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey constance.de

    Posted

    Oh dear, Constance, the pesky 5mg dose - I remember it well.  Success came for me finally when following a flare which necessitated an increase back to 10, followed by alternating 10/7.5 then 7.5 alternating with 5, my rheumy then kept me at 5mg for 5-6 months.  I then proceeded, reducing to 4.5 on one day of the first week, two of the second, three of the third etc, which proved successful all the way to zero - a snail's pace but not matter, it worked

    ​Meanwhile, iIf you are continuously unable to reduce to 5mg and below using the slow method, it might be an idea to ask your GP for a synacthen test to check whether your adrenal glands are getting up to speed in making their own natural supply of steroid (cortisol) again after having been suppressed by the long term artificial steroid. 

    ​I don't know why but I don't seem to be getting notification of posts in this group even though all the right boxes seem to be checked in my profile, so forgive me if I'm not appearing to answer any posts!

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