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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 18 2:40pm
In reply to @getbet64 "new to mayoclinic discussion. need feedback and support for autoimmune hepatitis. diagnosed in 2021 and in..." + (show)
@getbet64

new to mayoclinic discussion.
need feedback and support for autoimmune hepatitis. diagnosed in 2021 and in remission 2023

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Welcome @getbet64, You have come to the right place for feedback and support. There are many members who have posted discussions and comments on autoimmune hepatitis. Here's a link that lists the many discussions and comments from other members - https://connect.mayoclinic.org/search/discussions/?search=autoimmune%20hepatitis.

The American Association for the Study of Liver Diseases is a good place to learn more about the condition - https://www.aasld.org/liver-fellow-network/core-series/why-series/why-do-we-treat-autoimmune-hepatitis-immunomodulators.

Do you specific questions you are trying to get answered?

REPLY
humbug | @humbug | Feb 18 3:29pm
In reply to @getbet64 "new to mayoclinic discussion. need feedback and support for autoimmune hepatitis. diagnosed in 2021 and in..." + (show)
@getbet64

new to mayoclinic discussion.
need feedback and support for autoimmune hepatitis. diagnosed in 2021 and in remission 2023

Jump to this post

Hi getbet44,
I'm curious about what your remission journey looked like. Did you achieve remission with the standard prednisone/Imuran combo and, if so, I'm curious what dosages you were on?
I was recently diagnosed in December 2024 so don't have much to offer at this point, but really interested in hearing specifics related to remission from others. Thanks for posting.

REPLY
elopia32 | @elopia32 | Feb 19 11:03am
In reply to @sallysworld73 "Hi, I have been living with AIH since 2009. I go in and out of remission..." + (show)
@sallysworld73

Hi, I have been living with AIH since 2009. I go in and out of remission here and there. Usually when my numbers would start to shake over the years they would adjust my medication and they would fall into place within a few months. But the last time I was out of remission was for a year and a half and it was a living hell it got so bad. I’ve been back in remission about a year and a half again. Of course I sit here and type this as my liver feels like someone is squeezing it….bad day! Ugh but this disease is certainly not one that’s easily lived with.

Of course I have an additional 6 other autoimmune diseases so it’s difficult period. It’s like multiple personality disorder lol but with illnesses and they don’t like to play together that’s for sure!

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I am so sorry you are going through that. I also have AIH and was just diagnosed last year. So far mine is under control. The squeezing of the liver feeling is exactly how mine feels. I have stage Four cirrhosis, because they caught it very late. I also have hemochromatosis which also contributed. Hope things get better for you.

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2 replies
sallysworld73 | @sallysworld73 | Feb 19 1:04pm
In reply to @elopia32 "I am so sorry you are going through that. I also have AIH and was just..." + (show)
@elopia32

I am so sorry you are going through that. I also have AIH and was just diagnosed last year. So far mine is under control. The squeezing of the liver feeling is exactly how mine feels. I have stage Four cirrhosis, because they caught it very late. I also have hemochromatosis which also contributed. Hope things get better for you.

Jump to this post

And when you get that feeling of someone squeezing your liver to death ….theres just no getting comfortable no matter what you do. Your bra hurts to wear one, your pants hurt to wear. Hurts to sit up, hurts to lay down. You’re just miserable. And I find if one autoimmune goes off it sets the others off one by one.

REPLY
1 reply
robertmayo1 | @robertmayo1 | Feb 19 8:35pm
In reply to @elopia32 "I am so sorry you are going through that. I also have AIH and was just..." + (show)
@elopia32

I am so sorry you are going through that. I also have AIH and was just diagnosed last year. So far mine is under control. The squeezing of the liver feeling is exactly how mine feels. I have stage Four cirrhosis, because they caught it very late. I also have hemochromatosis which also contributed. Hope things get better for you.

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I was diagnosed with AIH in late 2022. They put me on AZA right away. I think I was at stage 4. Then I progressed to Stage 3. My next ultrasound is next week. I don't experience any pain from my liver. I guess I'm lucky.

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1 reply
robertmayo1 | @robertmayo1 | Feb 19 8:48pm
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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Hang in there. Your going to be OK. I was diagnosed with AIH back in late 2022. I am a 68 Yr. Old male diabetic. I don't have any fatigue. I am taking 100mg of Azathioprine daily. I have not had any side effects. about 6 months ago I was diagnosed with Clippers. That was difficult to say the least. I have fully recovered. Drink lots of water daily.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 20 4:27pm
In reply to @robertmayo1 "Hang in there. Your going to be OK. I was diagnosed with AIH back in late..." + (show)
@robertmayo1

Hang in there. Your going to be OK. I was diagnosed with AIH back in late 2022. I am a 68 Yr. Old male diabetic. I don't have any fatigue. I am taking 100mg of Azathioprine daily. I have not had any side effects. about 6 months ago I was diagnosed with Clippers. That was difficult to say the least. I have fully recovered. Drink lots of water daily.

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@robertmayo1 It’s interesting that you say you were diagnosed with Clippers but are now fully recovered. I’ve had Clippers for 8 years and am a long way from being recovered! Maybe you could go to the clippers support group page and tell them what your secrets are! Here is a link to the clippers group
https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/. You can respond and ask questions just like with any page for any support group.

REPLY
1 reply
robertmayo1 | @robertmayo1 | Feb 20 6:41pm
In reply to @becsbuddy "@robertmayo1 It’s interesting that you say you were diagnosed with Clippers but are now fully recovered...." + (show)
@becsbuddy

@robertmayo1 It’s interesting that you say you were diagnosed with Clippers but are now fully recovered. I’ve had Clippers for 8 years and am a long way from being recovered! Maybe you could go to the clippers support group page and tell them what your secrets are! Here is a link to the clippers group
https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/. You can respond and ask questions just like with any page for any support group.

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Sorry about the typo. My bad. I am not fully recovered. The process of recovery has been slow not without some setbacks.

REPLY
elopia32 | @elopia32 | Feb 24 9:54am
In reply to @sallysworld73 "And when you get that feeling of someone squeezing your liver to death ….theres just no..." + (show)
@sallysworld73

And when you get that feeling of someone squeezing your liver to death ….theres just no getting comfortable no matter what you do. Your bra hurts to wear one, your pants hurt to wear. Hurts to sit up, hurts to lay down. You’re just miserable. And I find if one autoimmune goes off it sets the others off one by one.

Jump to this post

Definitely the the bra and other clothing hurts to wear sometimes. My liver is at a stage 4 cirrhosis and I’m finding that the Azo is causing indirect bilirubin problems. I was so sick before they figured out what I had, that I thought I would need a transplant about a year and a half ago. It’s nice to chat with someone that understands the struggle, cause the struggle is real. Lol

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1 reply
elopia32 | @elopia32 | Feb 24 9:57am
In reply to @robertmayo1 "I was diagnosed with AIH in late 2022. They put me on AZA right away. I..." + (show)
@robertmayo1

I was diagnosed with AIH in late 2022. They put me on AZA right away. I think I was at stage 4. Then I progressed to Stage 3. My next ultrasound is next week. I don't experience any pain from my liver. I guess I'm lucky.

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That’s wonderful you don’t have the pain. My liver is stage 4 cirrhosis. Are you saying that yours was 4 and got better to a 3? If that’s so, then that really gives me hope.

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