Remission : Hi every one I haven't been... - British Liver Trust

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Remission

Alley27 profile image
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Hi every one I haven't been on here for a while because I have been living. I wondered if it is possible to get a remission wit AIH PBC overlap and if so, how can one find out. I am well, I am steroid free after three and a half years,.I only take the 6 mercaptopurine now and I wish I didn't have to take it. It is a cytotoxic chemotherapy drug used to treat leukemia, but I don't have leukemia. I just want to have my pre illness life back. Is it possible to stop taking this horrible drug and are there any other treatments I could try except azathioprine because I am allergic to that. I don't see my specialist until January and my gp doesn't know enough. Any information would be appreciated. Thank you, alley Williams x

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Alley27
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AyrshireK profile image
AyrshireK

I think if you are feeling well then your mercaptopurine is doing it's job and keeping your immune system in check. If you were to go drug free there is a high chance that you will experience a flare and go back to square one, requiring steroids all over again to keep the inflammation down and in also suffer more liver damage as a result. There seem to be a lot of AIH patients going onto the 6 mercaptopurine when they can't tolerate the other immune suppressants.

I'd stick with it, since sadly your liver will only deteriorate without it.

Katie x

Bolly profile image
Bolly in reply to AyrshireK

There is biochemical remission and histological remission as I understand it.

Biochemical remission is when your liver enzymes remain in normal range while on medication.

Histological remission is when you have a liver biopsy and there is no evidence of disease in the liver tissue.

Biochemical remission does not = histological remission. We've had people on the AIH Facebook page weaned off drugs because their blood results are normal, only to have one of these new multiscans that show inflammation still evident in the liver and then a biopsy which shows AIH still active.

Research suggests 20% of patients can attempt to come off meds. Who knows if you are the 20% or the 80% until you try, but with PBC as well i would think it would reduce your chances of full remission.

Its a risk/benefit ratio. What are the risks of coming off medication versus the benefits of staying on it.

Do you have any measurable side effects/damage from the 6Mp. 6Mp treats diseases such as IBS, Crohns, colitis and autoimmune diseases, as well as the acute leukemia you mention.

Mercaptopurine was developed in 1989, so has a good long track record.

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