I was originally diagnosed with PBC and following a biopsy also diagnosed with AIH/PBC overlap. I was already on Urso and pred and Aza were then added to the mix. After a few months of steroids my LFT's had greatly improved and some were almost normal. Next I was told I didn't have AIH but PBC alone. I had to finish the Pred. And stop the aza right away. Numbers have now risen quite high again and I'm told im a non-responder to URSO. The bit I don't understand is does PBC respond to pred? When I was on it my bloods quickly got a lot better and since stopping they have come back up. It's all a bit confusing! If anyone else has had good results from steroids I would really appreciate your thoughts on this. Thank you 😄
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Godfrey1
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I'm having issues St moment so have been looking some stuff up in the old internet. The aih can be controlled by steroids and they can take you off them when sufficiently under control but PBC isn't. I'm not a medical professional so I suggest you go back to your specialist & have a chat. Xx all the best.
I was same as you, once the steroids got the AIH / inflammation under control I came off the steroids. It took 18 months but bloods all good now. I have been on Imuran since with Urso. That's nearly 2 years ago. Even if you don't have AIH, you obviously had some sort of inflammation that was responding positively to the steroids. They are obv happy with your blood levels to stop.
Hmm, that's interesting. I have read medical literature extensively when I was diagnosed a couple of months ago and the researchers' stance was that corticosteroids were administered only to those with AIH/PBC overlap as PBC does not respond to them. A possible cause might be (as Junolee suggested) that you had some sort of liver inflammation and that responded to it. Or could it be that you do have an overlap syndrome but the biopsy could not detect it? Are you ANA positive or anti-smooth-muscle positive? Were your AST and ALT highly elevated? What about the gamma-globulins? Those may all be indicators of AIH. But you might also find out that in a few weeks you will respond well to Urso alone. I guess some further investigations might be of help to clarify things. Take care!
I think the fact that steroids work so well with inflammation generally, there is a line of thought that a course for PBC may be warranted. However unlike other conditions - I'm thinking of asthma for example - where the condition is brought under control, it seems as soon as steroids are ceased in PBC, LFTs can rise again ( this is of course if they have not responded/stopped responding to Urso.)
My consultant and I toyed with the idea of steroids a few years ago when it became obvious I had become a non responder to Urso but decided that it would only have a temporary effect which would be lost once steroids were ceased. He also thought - and I concurred - that the side effects would not be worth the minimal relief.
I was then recruited into the Obeticholic Acid trial which shows promising results in reducing LFTs and it seems as though it might be for commercial use next year....fingers crossed.
Hope this helps a little but as the others have said, best talk with your Dr for clarification.
AIH responds to the steroids and Aza.....is it possible they said you only havd the PBC now rather than both because the steroids and Aza were doing such a good job that you bloods came back normal. I would insist to see a specialist and would insist on a liver biopsy to rule AIH out. Liver biopsies aren't pleasant, but you will at least get a definite diagnosis one way or the other. I have AIH/PBC overlap and my bloods are now coming back normal. We have so far reduced the steroids down to 1mg because long term use of these is not good but I still have to take urso and mercaptopurine for now.
Thank you all for your posts.some food for thought there! I am now in touch with Robert and have sent all my results over so hopefully I will find out why I had such good results following steroids if I don't have an overlap.
Thank you all for taking the time to share, I really do appreciate it.
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