Autoimmune Hepatitis

[Boggyuk]

I have AH and was until recently on steroid treatment. I’m now only on maintenance (Azathioprine) but I continually feel sick and my tummy is always upset. Has anyone else experienced this and does anyone have any practical advice. I’ve seen my Dr and am awaiting a colonoscopy without any meaningful treatment. Really frustrated and feeling awful.

[AyrshireK]

Hi Boggy, do you do Facebook at all? There is a fantastic AIH support group on there where you'll find fellow patients some of whom have had issues with Aza and can perhaps fill you in on the alternatives that might be available (some people can't tolerate aza). Potenially there could be alternative ways to take your aza i.e. timings, whether to eat with food etc.

facebook.com/groups/AIHorgUK

My hubby has cirrhosis due to AIH but we have no experience with aza as he hasn't been put on an immune suppressant as his condition is deemed 'burned out'.

Katie

[Readlots]

Hi, I’m on Azathioprine and I know it can upset some people but I’ve been lucky. I started on a half dose and built up to a full dose. Sometimes it can take a while to settle down. But if you just don’t get on with it ask if there’s an alternative you could try. I’m sure someone on here will have had the same experience and may have some tips

[Magpie2021]

Hi, I am on azathioprine for about 4 years now, I also take colestramine sachets for the upset tummy.

[Bigbluemonkey]

I was started on azathioprine (25mg) for AH too after prednisolone. I had horrendous problems with it & stopped after 10 days.

Some people have a bad reaction to it. You sound like you have really struggled with it.

Nausea is a common side effect but if its really bad or intolerable I would seriously talk to your GP & consultant about it. There are alternatives. Most people move onto mercatopurine & tolerate it better than azathioprine. I have been put on budesonide, which is another steroid, but I will probably end up on mercatopurine long term.

Its about quality of life. You dont want to be spending your days in pain & feeling sick. It may settle down after a while. The fact you're on a small maintenance dose & you're having problems is a concern. Chat with your GP & consultant they may be able to prescribe something for the nausea or advise you about alternatives.

This is just my opinion. Not medical advice

Good luck

Take care