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Posted 7/30/2014 2:24 PM (GMT 0)
I have just literally been diagnosed with AIH. I'm on my 5th week of steroids. Stared on 12 week 12 now down to 8 for two weeks then 6 for 2 weeks then back to see liver consultant. Not sure what stage I'm at or how serious it is. I have had the liver biopsy and as far as I'm aware there is no damage to the liver or fat found. Its just inflammation.
What I want to know is can you have a normal life, or do you have to watch diet, exercise etc?
I'm only 34 and loved my few drinks at the weekend. I was told well I'm on the steroids not to consume any alcohol. Is that for the foreseeable or just until symptoms go. Or if I have to stay on meds for the foreseeable will that be the end of my few drinks. If it has to be done then I will just have to start getting use to the fact that this is it.
I had all the systems from the start, dark urine, pale stools, bilirubin level shot up to 610, but thankfully that's back down and the steroids got rid of the nauseous feeling. The original consultant I was with in my local hospital reckons I will make a full recover after the steroids cause they have worked so well. But I suppose I won't unitl I do this course of treatment. Also I have only met the liver specialist who is in a different hospital, he only seen me last week for the first time. So all my details have to be forwarded to him and he will review.
I suppose I should not jump the gun until the liver specialist can give me a detail analysis of the condition.
Just want to know of other peoples experiences and how they manage.
I just don't know what way I feel about the whole thing. I'm a very upbeat person and try to think positive but its hard knowing I might have a life long illness :(
Posted 7/30/2014 3:13 PM (GMT 0)
Maggie.

Welcome to the HW Hepatitis Forum.

You have come to the right place. One of our Moderators has AIH and we have a member who moderates an AIH forum in the UK but posts here to. I suspect you are in the UK, or maybe Australia from some of your phrases...she will be a good contact for you.

I am the partner of a man with Hep C and Alcoholic cirrhosis, so my experience is somewhat different than yours, but over time have come to learn some things until our AIHers log on.

AIH, caught early, can be managed with meds and folks report they live a pretty normal life....have careers, families....the whole lot.

During an initial episode or a flare up, they put you on high doses of steroids, but taper as soon as things start to normalize. There are maintenance meds our AIHers will discuss.

Yes, you need to skip the alcohol until or unless you get different directions from your hepatologist. Liver disease is exacerbated by alcohol use and I wouldn't take any chances in accelerating damage.

Glad to hear your numbers are normalizing on the steroids....and who needs sleep??? Ha Ha.

Best to you as you get this under control. I am sure, with proper meds and life style choices, you will do well.

Hugs,

Mama Lama
Posted 7/30/2014 3:15 PM (GMT 0)
Hi Maggie

Welcome. It can be very scary at first but AIH is very liveable with. I have had it for 15 years now and really get on with things fine. But it is a controllable condition not curable. So that takes a bit of time to get your head around.

As soon as the inflammation is under control with the steroids the doctor may well add an immunosuppressant in - the most usual one is azathioprine. This then allows the steroid dose to be reduced.

Are you in the UK by any chance (I am)? Just wondered where the liver specialist you were seeing is based?

On alcohol - certainly stay off it whilst your readings are high. The last thing your poor liver needs is to have to process alcohol at the moment. Longer term many specialists in the UK tell you that it is OK to drink in moderation when readings are normal. (The advice tends to be different in the US I think). But that is an individual thing. And moderation means possibly a few units of alcohol a week and never ever too much at any one time. But that is further down track. Most of us choose to not drink alcohol at all in my experience or at most the odd glass at a wedding or something.

Ann
Posted 7/30/2014 3:18 PM (GMT 0)
And in case you hadn't guessed I am the person Mama Lama referred to! I moderate an AIH forum and am setting up a Support Group for AIH as well.
Posted 7/30/2014 3:38 PM (GMT 0)
Hi Ann/Mama Lama thanks so so much Maggie for the update.

Its hard to digest being diagnosed when I don't know much about the disorder. I live in Ireland and at the very early stages. I'm looking forward to seeing my consultant in 3 weeks time so he can give me the proper run down. All the details from my local hospital have to be forwarded to him.
My rubin levels are back down to 60 so they still have to go down a little. I can feel the odd little niggle in my liver but nothing major. Other than that I feel good.

I will defo stay off alcohol until all my readings are back on track then I suppose its trial and error then. I will never go back to the way I use to consume (which was not that bad) but just to be able to enjoy a couple of glasses of wine on a weekend night would be a bonus. But if its not meant to be I'll take that.

The steroids can be hard going, I'm constantly hungry, feel a little be over exerted, and I was finding it hard to fall asleep at night but I'm reading now and that helps me to drift off.

Is there anything else I should know? Did you ever go down the herbal route of medication to help the liver milk thistle etc?
Posted 7/30/2014 4:18 PM (GMT 0)
Hi Maggie

Not UK then but I do know a few people from Ireland with AIH.

I think my main advice would be to try and limit the weight gain. Really really hard when taking steroids as you are constantly hungry but it can be very difficult to shift once it is there. If you are taking prednisolone then do ask your liver specialist about the possibility of budesonide. Still a steroid but generally far fewer side effects.

One of the things with all liver disease is that you must check any supplement/medication with your doctor before trying it. All these things are processed by your liver so you have to check. My gastros view of milk thistle is that he doesn't believe for a moment it does any good but is happy that at the correct doses it doesn't do any harm! But that was advice specific to me so do check. I did try it for 3 months. Didn't feel any different and it didn't seem to impact my readings so I stopped.

I found it really helpful to educate myself about AIH. And I took control of it. It can be easy in the UK to just let your GP and specialists run everything (don't know if it is the same in Ireland) but I think its important not to let that happen. And find a specialist who deals with quite a large number of AIH patients and is comfortable with prescribing a range of medications. Most people get on well with azathioprine but some do not and at that point some less experienced doctors get a little lost.

Follow the advice of your liver doc on alcohol. I would recommend being prepared to hear that you should abstain permanently - many docs do say that. But you may be told after a few months or a year that you can have the very occasional small glass of wine.

Ann
Posted 7/30/2014 5:34 PM (GMT 0)

Hi Maggie,

Welcome to the forum.  AIH is a lifelong illness but as Ann and MamaLama have said, it is treatable.  It sounds like your body is responding well to the steroids so that's great.  I would definitely speak with a hepatologist about adding an immunosuppressant.  It will more quickly get you off the steroids and can manage your illness.  If azathioprine doesn't work for you (it's usually the first the try) then there are several others available.

I used to be like you and enjoy my few drinks a week.  I have completely abstained since my diagnosis as I feel there is really no need.  You get over the social thing of not drinking.  I save my calories for sweets instead of wasting them on wine or something else :-)  I'm also the designated driver when we go out so I know others are staying safe too :-)

I live a perfectly normal life with AIH, it's been over 7 years. Doctors should encourage a lifestyle that includes whatever exercise you can handle.  You don't want to encourage a fatty liver, so diet and exercise is a must.  Avoiding weight gain whilst on steroids is really hard.  I gained 45lbs.  So the trick would be to not keep jumky foods around while you're dealing with the pred.  Have 'em later when you aren't famished all the time :-)

Posted 7/30/2014 11:32 PM (GMT 0)
Welcome to the forum Maggie.

I have AIH as well and winding down on the Prednisone and Azathioprine.
I have lost about 45 lbs, even while on the steroids. I have gallstones as well so I have to keep a healthy diet for that issue.

I am much better than I was 3 1/2 months ago (when diagnosed). I can go a full day of work and hit the gym for a bit. This helps take the edge off the stress from work, rather than drinking.
My bilirubin has been controlled and I have to get some blood work and a Dr visit in the next couple weeks.
Hopefully I can come off the Pred soon, it is giving me acne.

Post Edited (Valynon) : 7/30/2014 5:38:58 PM (GMT-6)

Posted 7/31/2014 8:17 AM (GMT 0)
Hi Valynon
I have gallstones too. I'm not really watching what I'm eating at the moment cause all I'm graving is something sweet. Thankfully I haven't put on any weight I lost a stone while in hospital. I'm walking every evening try not put up any weight.
I suppose I have a fake energy on the steroids so work and normal every day life is fine.
Are you still on the steroids? Can you tell me your dosage. Is there different stages of AIH? Could you have a slight version of it or is it just a full blown disorder.
That's what I'm on the prednisolone.
Sorry for all the questions but what time of the day do you take your meds?
I'm on Vit D3 along with a stomach tablet then once a week I have to take a bone tablet.
Did you use to enjoy a few drinks?
Posted 7/31/2014 5:34 PM (GMT 0)

Maggie,

If you have gallstones too it might be worth it to ask your doctor about ursodiol (Ursofalk, Ursoforte, Actigall & some other brands names - the drug name is ursodeoxycholic acid).  It's a bile acid and helps to keep bile thin.

I take all my meds in the morning after breakfast.  Aza gives me issues without food.  I have a couple of meds I take twice a day but the pred and half my aza I always took in the morning.

You could have a milder form of AIH and/or less damage than other people.  One never knows what a flare may bring though.  I've heard that subsequent flares are harder to stabilize than the initial one so best to try to avoid them.

I'm happy to hear you're taking something for your stomach.  The longer term pred can be hard on stomach lining.  I stopped taking the proton pump inhibitor I was on (Prevacid) a few months after I weaned off the pred.

Posted 8/27/2014 4:00 AM (GMT 0)
We haven't heard from Maggie lately....Maggie? How are you doing?

Hugs,

Mama Lama
Posted 8/28/2014 4:41 AM (GMT 0)
Hi,
I'm on 5mg of Pred and 50mg of Azathioprine daily , taken in AM with breakfast.

I did drink a fair bit of beer on weekends and holidays. A biopsy showed some minor scarring.
Posted 8/28/2014 5:20 PM (GMT 0)

Hi Valynon,

I'm surprised you're on such a low dose of aza to go through your pred wean.  How are your numbers and will they try to wean you off the 5mg pred or wait a while?

Posted 2/19/2015 1:22 AM (GMT 0)
Hello,
I'm new to this group and was only recently diagnosed with AIH. I was on Uceris for only 4 days and had a horrible reaction and had to stop. So I'l be interested in knowing what meds, and what doses, people have been started on.

I had been sick for a year with pneumonia, and just as I was beginning to recover, I got sick again. I think that was when the hep started. But I have rarely had a normal day in two years. So it is amazing to me that people can actually work and live normal lives.

I am always exhausted, can't do more than one thing a day, and almost everything tires me out. Two years ago, I was a normal person -- worked, walked at least 5 miles a day, had a very active and full life. Now I am home a lot, feeling lousy and of course getting depressed. So this dx kind of knocked me for a loop

Thanks,
Sybil
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