1. < Autoimmune Diseases

Autoimmune Hepatitis and remission?

Posted by humbug @humbug, Jan 3 7:34am

I'm curious if anyone has achieved remission, and for how long, with autoimmune hepatitis and if so what their treatment plan was. Also, how are you monitored when in remission? Bloodwork? Self-monitoring?

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kiegelm | @kiegelm | Jan 7 6:43am
In reply to @sawsan77 "Hi, I have been diagnosed two weeks ago with Autoimmune hepatitis; to be honest I have..." + (show)
@sawsan77

Hi,
I have been diagnosed two weeks ago with Autoimmune hepatitis; to be honest I have no knowledge about this situation and I do not know anybody who suffers from it.
I would like please to have some advice on medication and how to cope with it.
I am so shocked I do not know how to cope.
Thank you to all.

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I had chronic hepatitis C and I got rid of it but it did take a toll on my liver I had it for over 30 years before there was a cure at first when I got rid of it had no side effects and now ugh it's overwhelming.I maybe able to offer a few suggestions but if you don't mind is it B/C and how long do you think you have had it?

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johnslk1956 | @johnslk1956 | Jan 7 12:48pm

4 years after diagnosis but I suspect I’ve had it much longer

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kiegelm | @kiegelm | Jan 10 12:12pm

I was diagnosed at 29 and I am 56 and now all the health problems are going on w/liver so as soon as you can get treatment the faster you do better the outcome good luck

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kiegelm | @kiegelm | Jan 15 9:42am
In reply to @sawsan77 "Hi, I have been diagnosed two weeks ago with Autoimmune hepatitis; to be honest I have..." + (show)
@sawsan77

Hi,
I have been diagnosed two weeks ago with Autoimmune hepatitis; to be honest I have no knowledge about this situation and I do not know anybody who suffers from it.
I would like please to have some advice on medication and how to cope with it.
I am so shocked I do not know how to cope.
Thank you to all.

Jump to this post

Well there are a lot of medications you can take I was prescribed harvoni and I was cured in 8 weeks but took it for 12 with no side effects at all.I hope you get it taken care of cause at first there are no signs at all but as time ticks by they end up coming and they are nothing nice.I watched someone pass from this so please get your self some help it's out there good luck

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kiegelm | @kiegelm | Jan 15 9:47am
In reply to @mydiamondsx8 "I was diagnosed with Autoimmune hepatitis with fibrosis 3-4 in 2023, my liver enzymes had been..." + (show)
@mydiamondsx8

I was diagnosed with Autoimmune hepatitis with fibrosis 3-4 in 2023, my liver enzymes had been elevated for many years during and after chemo for breast cancer. In late 2022 I started feeling very fatigued and would fall asleep up to 5 times a day which isn't normal for me because I can only sleep about 4 hours a night, so I sought further testing which led my doctors to finding I had AIH. They started me on Azathioprine but I only lasted 2 weeks on it I was in extreme pain and could barely move. I have Fibromyalgia and in remission for Lupus but AIH has also been attacking my thyroid. I initially declined Prednisone because I didn't need to gain any more weight with this medication. They tried Budesonide and same effects, then Mercaptopurine and I was sick with that too. Finally Cellcept has been good to me and my enzyme numbers have come down near normal levels and I feel mostly better, getting there slowly. Well wishes,take care.

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Wow you have been through so much I have this liver problem which has gone to my kidneys but you have endured a lot just wanted to say good luck and I am happy that you're last medication is working.

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1 reply
kiegelm | @kiegelm | Jan 15 9:52am

I'm not a doctor but my daughter is a drinker and she was told she had autoimmune hepatitis and I believe if she would have stayed off the alcohol she could probably reguvinat her liver eat healthy, exercise, spiritually all the good stuff unfortunately she doesn't want to but back to that question the answer is yes but it depends on how much damage it did good luck

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1 reply
MyKai17 | @mydiamondsx8 | Jan 15 10:26am
In reply to @kiegelm "Wow you have been through so much I have this liver problem which has gone to..." + (show)
@kiegelm

Wow you have been through so much I have this liver problem which has gone to my kidneys but you have endured a lot just wanted to say good luck and I am happy that you're last medication is working.

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Thank you for the well wishes and the same for you. 🙂

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MyKai17 | @mydiamondsx8 | Jan 15 10:28am
In reply to @kiegelm "I'm not a doctor but my daughter is a drinker and she was told she had..." + (show)
@kiegelm

I'm not a doctor but my daughter is a drinker and she was told she had autoimmune hepatitis and I believe if she would have stayed off the alcohol she could probably reguvinat her liver eat healthy, exercise, spiritually all the good stuff unfortunately she doesn't want to but back to that question the answer is yes but it depends on how much damage it did good luck

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I am sorry to hear about your daughter, I wish she would listen to you and her doctor. All the best to you and for your daughter, I hope that one day soon she realizes what she is doing and changes her life for the better. Best of luck to you both.

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humbug | @humbug | Jan 25 6:56am

I'm curious if anyone has been successful in managing their autoimmune hepatitis naturally (food, supplements, etc) as opposed to the medication route.

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5 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 25 7:36am
In reply to @humbug "I'm curious if anyone has been successful in managing their autoimmune hepatitis naturally (food, supplements, etc)..." + (show)
@humbug

I'm curious if anyone has been successful in managing their autoimmune hepatitis naturally (food, supplements, etc) as opposed to the medication route.

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Hello @humbug, There is another discussion that you may want to scan through to learn what others have shared:
-- Autoimmune hepatitis: Any special diet I should be eating?
https://connect.mayoclinic.org/discussion/autoimmune-hepatitis-7/
While you wait for members to respond, I thought you might find these references helpful if you haven't already seen them:
-- Alternative Treatments and Supplements | AIHA: https://aihep.org/alternative-treatments/
-- Patient education: Autoimmune hepatitis (Beyond the Basics): https://www.uptodate.com/contents/autoimmune-hepatitis-beyond-the-basics/print

Have you discussed any alternative treatments with your doctor or care team to see if they may have some suggestions?

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