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Tapering off Cortef

Posted , 3 users are following.

patty44596
patty44596

I am interested in hearing about your tapering experience. Im under the 20mg that our body normally makes. Im at 12.5 mg a day. Im reducing 2.5 mg every two weeks. I do get a little light headed and flu like systoms each time I reduce but that levels out in the next two weeks. Every two weeks when I taper I get scared and feel I dont know what to expect.

0 likes, 6 replies

6 Replies

  • cycliccushings
    cycliccushings patty44596

    Posted

    Im proud of you tapering off the cortisol medication. This is difficult, but doable. I am a Cushings survivor. I had severe cyclic cushings, diagnosed in 1989, and it took me quite some time to wean myself off all the medication. I have even had a second pituitary surgery, 28 years later in 2016. But i am not using cortisone mefs. Every Cushings patient is different, none of us have the same symptoms

    nor the same recovery, we are all unique in our pathway. Just know weaning yourself is part of that recovery and we all care how you are doing.

  • caroline31144
    caroline31144 patty44596

    Posted

    Hi, I had my surgery for a adrenal tumour 3 Years ago and was told to slowly wean myself off My hydrocortisone. I did this and my body swelled and I was in so much pain so the doctor made me up the dose back to 20mg. 

    I tried a few more times to slowly cut my dose but each time I ended up in hospital until my consultant said that my other adrenal gland has effectively shrivelled up and died so I had to keep on this dose for life.

    However I was always weak and under the weather and a few months ago I became ill and had to up my dose to 30mg a day and everytime iv tried to drop it back down to 20mg I become ill?!

    So I’m currently on this dose and I’m scared of what will happen should I try to drop the dose.

    • cycliccushings
      cycliccushings caroline31144

      Posted

      Caroline:

      If your cortizone pill is not a capsule, if it was me, id take a knife and cut a little sliver off the pill and id do that for a week or so, then cut a little bit off the pill and do that amount for a week or so, then a bit more until you have elimimated one pill. And if taking more. Start om the next pill. You know your body, no one else knows it like you..work at it on your own pace. Keep us posted how you are doing, as we care.

    • patty44596
      patty44596 cycliccushings

      Posted

      I agree. It was suggested by my Endo to cut 5mg every two weeks. I only reduce 2.5mg and show symptoms. I stay there until i feel better. Ive read elsewhere by others to listen to your body. This is my first attempt so Im scared too. Whats the lowest you'be been before going back up?

    • cycliccushings
      cycliccushings patty44596

      Posted

      I weaned myself off and never went back on the cortisol replacement, even after doing the second pituitary surgery. Just slowly tapering, and watching your body, you will just be fine. Even if you have to add a little extra one day and the cut the next day, you are making positive progress.
  • vicky61456
    vicky61456 patty44596

    Posted

    Hi Patty, Can't help much here.  I had my tumour removed from my Pituitary Gland a few years ago but due to complications I have been told that I will probably be on steroids for life.  I take the usual 20mg a day.

     

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