Steroid Free Yipeeee

Hi, I am so happy that for the first time in over three years I am steroid free. I stopped them on Saturday so I have taken none at all since. I have AIH/PBC overlap and I am hoping that my liver will hold it's own and I won't have to go back on them. Thing is, my asthma is really bad today; I had forgotten what a bad day with asthma felt like lol and oh my goodness my bones hurt but that could be the osteopenia which the steroids caused, and I have a very clunky left hip..... are we falling apart I wondered, i mean am at that age lol. I hope that this problem with my chest is not autoimmune, because it is a possibility, I don't think its the asthma, at least not all of it.

I am ok and just so pleased that I am steroid free, I have to keep taking the mercaptopurine and the urso but at least the steroids are gone for the near future.

Here's hoping

Wishing you all a good weekend xx

4 Replies

  • That is great news conniefused :-) Hope all goes well and you can stay off the steroids for good.

  • Did you go off the steroids under a doctor's supervision? I believe it is important to taper down gradually, as opposed to going off cold turkey. If you were on them a long time and then stopped abruptly it can be very hard on the body and cause problems. This is somewhat dose dependent, and you don't say which steroid and dose you were on. It's wonderful if you're able to manage without them, but please consult with a doctor about your new symptoms in the context of your steroid use and discontinuation. Best of luck.

  • This is exactly what has been done we have reduced it down over 12 months...funnily, i had an asthma attack on Friday afternoon and guess what they are making me take...yup steroids. My Gp did have to call my consultant to see what right course of action should be. My asthma was very bad before I was diagnosed with AIH/PBC/Hashis in 2012 and since I was put on steroids I have had no trouble at all with my asthma but of course as soon as the steroids clear my system I got a massive flare. I actually had forgotten what it was like to have a bad chest lol..oh will be okayx

  • Hello conniefused.

    Having experience of living with someone who suffered just asthma it does seem that from time to time steroids can be required as a further line of medication if inhalers or other medications for asthma don't appear to be working at the time.

    Hopefully you can stay off the steroids for awhile but I suppose can be tricky at times if there is more than just PBC that we have.

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