auto-immune hepatitis - advice?

Dany, one of the moderators will be along soon to add more info I am sure. But I can provide some info - I have had AIH for 14 years now.

It is difficult to know where to start with such a wide ranging question! So I will try and concentrate on information I think is most useful on being given the diagnosis. It is important to remember that AIH is controllable (not curable) by meds and the majority of people find a balance of meds that suits them, to lead a normal life. Some people can stop the steroids after a time but about 40% of patients with AIH need low dose steroids long term, as well as an immunosuppressant like azathioprine. But it can take time to find the right balance.

My main advice is to be proactive. Make sure she understands what tests she is having and what the results are. Read up about the condition - the British Liver Trust has a good leaflet you can download. It can be useful to those in other countries as well, I am sure.. It would be good to find out how many patients with AIH her doctor has. Some gastros know a lot--but many don't. Hepatologists with a special interest in AIH will have more medications they use and prescribe. Especially useful if your friend doesn't get on with the first ones they try.

What steroid is your friend on? If it is prednisolone/prednisone I would ask about budesonide as an alternative. It has a much better side effect profile.

As well as this forum, there are other forums specifically for people with AIH and your friend may want to find one of those as well.

Be careful about food intake. It is very easy for the weight to pile on when you start steroids (you start on a high dose then reduce as the condition improves) so keep some healthy snacks on hand when the increased appetite strikes. No need for any special diet - just eat healthily. Many people on this forum recommend avoiding red meat to help the liver but I haven't found it helps me - so I don't! I do find a low carb diet helps - but that's a personal thing.

There is no hard evidence to support any 'natural' product to help AIH - beware of claims to the contrary. But many products, natural or otherwise, have the potential to harm as the liver metabolises everything you take. So do check with a doc before taking anything or following any suggested extreme diet/fasting etc. Often the doc will say that it is OK to try something but they don't think it will help but sometimes they will warn of the serious damage that can be done by some products. Personally I don't take anything but have tried milk thistle after checking with my doctor - it had no effect for me.

Hope that helps.

Ann

Post Edited By Moderator (hep93) : 9/20/2013 10:23:46 AM (GMT-6)

Wow, thanks for that - I will show her this info. Thanks for your kindness in replying.

Hi Franny,
Welcome to HW. I agree with everything Ann said. Definitely have her speak with her doc about budesonide over pred. My hepatologist mentioned to me that when he was at the Cleveland Clinic for a meeting and spoke about AIH that there was a consensus to start using budesonide as it works well and has fewer side effects. Azathioprine is the usual immunosuppressant that patients are started on usually very early on. The immunosuppressants are considered steroid-sparing drugs. They make it easier to wean off the steroids and although they also have a list of fairly bad future risks, they are still better over the long run than steroid side effects.
I never had a TPMT test done but some hepatologists order it prior to prescribing Aza. It can help identify people who will have trouble metabolizing the drug. There are other immunosuppressants available if she does have trouble with Aza.
Do you know what her LFT levels were and what dose of pred and aza she'll be starting on?
I'm posting on my phone which makes looking at previous posts a little more challenging so I'll end for now. You're a good friend for looking into this!
Oh and no more alcohol for your friend. I know some people, once the disease is stable, are allowed a weekly glass of wine but if/when her doc allows it is up to him/her. For now, none :). I was never put on any diet restrictions apart from that. If she has a lot of fluid retention from the steroids, decrease salt intake. As Ann said, definitely keep healthy snacks around...steroids make you really snacky!!

Mebaih, good to get your personal input. Thanks for posting. I have hep C, not AIH. What is a TVT?

Hugs,
Connie

I think the starting dose of azathioprine your doc is considering is 50mg - people usually take between 50mg and 200mg. ALT readings as high as that are not uncommon in AIH - they will drop quickly on treatment. Most docs have their preferred doses for pred. I was started on 30mg but had to reduce to 20mg within a week because of the horrendous side effects. Luckily the lower dose worked well for me and I was quickly able to reduce it to zero and get rid of the side effects.

It will be a great shame if you can't take budesonide - most people I know who take it find the side effects far far less than pred. (I took it when I had a flare and couldn't believe the difference compared to pred.)

It is worth starting to collate your blood test results and begin to understand what they mean. It puts you in control and tells the doc you are taking a deep interest. Are you under the care of a gastroenterologist or a hepatologist?

Never heard of any link to a mesh even on the other forums I go on. As your doc has probably explained with AIH people have to have a genetic pre disposition to get it and then something triggers it. This can often be an infection but for many people it is never found. Once you have triggered that reaction then as far as I am aware getting rid of the 'trigger' doesn't alter things (your body still recognises your liver cells as a germ and attacks them) so I am surprised that people reckon they recover from AIH when a mesh is removed even if it was the 'cause'. But some drugs can cause a reaction that mimics AIH which resolves when the drug is withdrawn - but it isn't AIH as such I don't think. So perhaps something similar can happen with a mesh? Dany may know more.

Keep us posted.

Ann

Thank you for being so informative. As you can imagine I am still learning as it has all happened so quickly and apart from tiredness have not felt unwell. I sense that may change when I start the steroids and suppressant.I am under a gastroentorologist at the moment.

Hi Dany

Thank you for your reply.

I started prednisolone today. I am on 30mg a day with a view to reduce the dosage when my blood tests improve. I did ask my gastroentorogist re budesonide but I think he is following the more usual drug route. I sense those patients under a heptologist seems to be prescribed budesonide. I start azathriprine when my test is back confirning I am ok to take it. 

As far as the TVT is concerned it makes sense what you all say. It seems they are suggesting after 5+ years the body rejects the mesh which triggers the autoimmune response. Probably difficult to ever really find the trigger. Certainly there is no real cause for my AIH.

Good to hear you had lots of energy. I think what I find hard is I don't feel ill and the Dr apologised that I will feel ill on the steroids. Needs must!