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recently diagnosed with aih

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Posted 8/17/2015 3:36 PM (GMT 0)
Hi everyone, I was diagnosed with aih about two months ago after having gallbladder surgery. I couldn't quite believe it as since having the gb out I was feeling so well, back to my old self after five months of gb hell! I didn't have any symptoms of aih at all but apparently the liver biopsy, taken at the time of the gb surgery, and blood tests say that I do have it. I have been put on 9mg of budesonide and 50mg of imurel and after one week my alt and ast were down and I'm hoping that at the end of August they will have gone down even further so that the steroids can be reduced.

I've found a lot of information on the internet, also on another specific aih forum, about eating and taking of supplements because the doctors are not very forthcoming with information. Anyway, I'm getting on with life as usual and as I am asymptomatic, and am not suffering any kind of side effects from the medication, I can practically forget that I have aih.

Something I'm not sure about is what happens when you're in remission. Does it mean that you don't have to take any medication? or does it mean that you take a very low dose.

This seems a very friendly, active forum and I'm happy to be able to have contact with others who have aih.

fleur
Posted 8/17/2015 5:15 PM (GMT 0)
Welcome to the Hep forum! We are glad you found us. I am the wife of a man with end stage liver disease. He is waiting for a transplant. He had the hep C virus destroying his liver for decades before he was diagnosed with cirrhosis in 2005. After two treatments themister eradicated the virus... but the damage was done. He needs a new liver.

We have a moderator, Dany, with AIH. And there are several members with AIH who should be along shortly to help with your questions. I don't know much at all about AIH, but wanted to make sure you know you are welcome here:) Big Hugs
Posted 8/17/2015 6:55 PM (GMT 0)
the miz and I have sent notes to a few aih members. Like her I am caregiver to a liver patient too, thougj Mike is quite well after 5 years of suffering.

I will answer one of your questions, yes...expect to take meds for life. Your condition causes your own body to attack your liver and could actually destroy your liver completely. that would be bad. So they give you steroids and some antirejection meds so that the process of attacking your liver stops. Many in remission live successful lives, often not thinking about it other than taking a few pills. The trick is to avoid a FLARE up.

Hugs,

Mama Lama
Posted 8/17/2015 7:28 PM (GMT 0)
Hi and welcome

Pleased you are so well. Remission can mean normal readings etc with or without meds so it gets a bit confusing. There are a very few people who after several years of treatment are able to come off all meds. The AIH seems to burn out in them. But many docs would question whether these people truly had AIH or not - another confusing thing about AIH.so it's a topic to discuss with your hep and then weigh up the pros and cons.

But many of us are in remission on meds. Yes they try and reduce the meds as much as possible ideally with no steroids and only an immunosuppressant. (Not possible for many who need long term low dose steroids). I live a completely normal life really - just take my tablets (mycophenolate mofetil in my case) every day and see my hep twice a year.

Ann
Posted 8/18/2015 4:15 PM (GMT 0)
Thank you ladies so much for your warm welcome and for the advice. I feel lucky and very grateful that I do not have symptoms as many people do. My doctor also thinks I am lucky as it was caught early and really by chance when I had gb surgery. I intend to give my liver all the tender loving care possible to help it heal.

I hope, themiz, that your husband soon has a transplant. The waiting must be so stressful for you both and Mama Lama glad your husband is doing well. Ann, you've given me advice on another forum, glad you are so well.

fleur xx
Posted 10/15/2015 3:48 AM (GMT 0)
Fleur48 what type of supplements were suggested to you.  I haven't been able to find any topics on using them for the exhaustion.  Have you tried any and have they helped.

Thanks

Barbara

Posted 10/17/2015 1:51 PM (GMT 0)
Hi Barbara, my hep doctor is totally against supplements. Before being diagnosed I was taking collagen, selenium-zinc and milk thistle supplements and he told me to stop taking the milk thistle and collagen but that I could continue with the selenium and zinc, which I take for my nails. I am very fortunate in that I am asymptomatic and I don't have any side effects from the budesonide and aza that I'm at present taking.
There is a very good forum on facebook only for people with AIH. Its a very active, friendly group where you will get advice on everything concerning aih.
Good luck, fleur
Posted 10/20/2015 7:26 PM (GMT 0)
Hello!

I'm sorry I've been a terrible moderator. I was much better at my previous job when I had more time at my desk. Then HealingWell had an app and the app is gone so it makes it more challenging on my phone...which is challenging enough to type a lot on the phone :-) So I apologize for missing the initial message (I was traveling back from Hawai'i that day :-) )

Anywho, I agree with the others. Supplements are questionable as there is no data regarding their effect on a "not normal" body nor on their drug interactions. That's probably, primarily, why doctors recommend not using them. Some have been around long enough that they can guess the effects but it's safest to not go that route.

Ann & I are similar in that we live with our meds and live pretty normal lives. I see my hepatologist once a year and have bloods drawn every 6 months. Per 'remission', some like to call it 'stable'...A few can come off meds completely however, there is a high relapse rate for AIH. It's my understanding that each flare is harder to get under control. So, many patients remain on some form of medication. The ultimate goal is to try to remove all steroids but that isn't always possible so the lowest dose is the next goal.

Glad to hear you are well!
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