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.

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)

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?

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)

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.

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)

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.

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)

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.

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)

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.

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)

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.

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 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.

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)

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

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)

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

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)

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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