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Autoimmune hepatitis: Questions about treatment and transplant

Posted by nativargas @nativargas, Jun 25, 2024

I’m 34, I’ve diagnosed HIA 23 year ago. Also hashimoto, and Sörgen.
Now my liver is with cirrosis and my treatment base is prednisone + metfomyne + diuretics +rifaximina. I’m expecting a transplant but I’m so afraid about it.

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

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chopin002 | @chopin002 | May 25, 2025
In reply to @jeannef2025 "How bad are your liver enzymes? And what were the results of your biopsy? Mine was..." + (show)
Profile picture for jeannef2025 @jeannef2025

How bad are your liver enzymes? And what were the results of your biopsy? Mine was only mild fibrosis, so fully recoverable.

Whether the cure is worse than the condition depends a lot of how bad your liver already is. There's a FB group support group for AIH and multiple members have needed liver transplants, some very quickly after dx. I would also prefer to not take the meds (there is no cure), but don't want to risk a liver transplant.

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Mild for now. Enzymes high 100,S. They will monitor every few months. For past year and a half stayed about the same. No one wants a transplant. If young and otherwise healthy take the meds.

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chopin002 | @chopin002 | May 25, 2025
In reply to @chopin002 "Diagnosed with autoimmune hepatitis . Already have PMR , GCA, and Graves’ disease. Taking a pass..." + (show)
Profile picture for chopin002 @chopin002

Diagnosed with autoimmune hepatitis .
Already have PMR , GCA, and Graves’ disease.
Taking a pass on treatment. The drugs sound worse than the condition and I am 71 years old. I believe 5-10 good years better than 10-20 poor, sickly years. Any try AZA without side effects. Already taken prednisone for 7 years and finally down to one mg. Staying there.

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Really, just read could be helpful.
Some say carnivore diet but realistically can’t imagine that.
There’s always ice bathing. I give up.

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jeannef2025 | @jeannef2025 | May 25, 2025
In reply to @mydiamondsx8 "Well as I mentioned I have fibromyalgia and have yet to find any relief from the..." + (show)
Profile picture for MyKai17 @mydiamondsx8

Well as I mentioned I have fibromyalgia and have yet to find any relief from the pain although I stay as active as possible and I sleep about 3-4 hours a night. I had Lupus about 26 yrs ago and misdiagnosed until 2004 then Hydroxychloroquine helped. Then came fibromyalgia but meds don't work for me. So when I was diagnosed with AIH meds made my belly swell and the pain was widespread aching and I could barely move due to Azathioprine and Budesonide, then they tried them seperately and same thing happened. With Cellcept my numbers are usually pretty good once in awhile they go a bit higher then normal but the belly still swells and I have water retention. If I skip a couple of doses when I am feeling ill the belly goes down almost flat, that is my only complaint.

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Wow. So are you getting ascites? Did they do the test to determine if your body can process the aza? Or is the swelling more gastro?

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2 replies
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chopin002 | @chopin002 | May 25, 2025
In reply to @jeannef2025 "Wow. So are you getting ascites? Did they do the test to determine if your body..." + (show)
Profile picture for jeannef2025 @jeannef2025

Wow. So are you getting ascites? Did they do the test to determine if your body can process the aza? Or is the swelling more gastro?

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I have no symptoms whatsoever which is why I don’t want to take the meds. Just because I have other autoimmune conditions and high liver about 180 they did a biopsy. I feel fine, if I wasn’t tested would never know. Don’t drink, don’t smoke, normal weight, eat healthy. If I start having problems would be a different story.

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1 reply
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MyKai17 | @mydiamondsx8 | May 25, 2025
In reply to @jeannef2025 "Wow. So are you getting ascites? Did they do the test to determine if your body..." + (show)
Profile picture for jeannef2025 @jeannef2025

Wow. So are you getting ascites? Did they do the test to determine if your body can process the aza? Or is the swelling more gastro?

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It seems to me that I am developing ascites and my primary dr seems to think so ,I have an upcoming appointment in July with the Hepatologist so for now I'm having to take Furosemide. They did test me and even though it says my body can process the medications, I am still having a lot of pain when I take them so all the doctors who have treated me have said to stay off them. Now I seem to be having episodes of allergic reactions to petscan injection medications, to the injection for stress testing, Sestambi scan injections, pizza, something I didn't have in the past and it's scary not knowing how my body will react to anything that goes in it. These are tests I've had many times over the years so not sure what all is going on, I have an appt with the Allergist in a couple of weeks.

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Pcn3 | @boomcan | May 27, 2025
In reply to @chopin002 "Diagnosed with autoimmune hepatitis . Already have PMR , GCA, and Graves’ disease. Taking a pass..." + (show)
Profile picture for chopin002 @chopin002

Diagnosed with autoimmune hepatitis .
Already have PMR , GCA, and Graves’ disease.
Taking a pass on treatment. The drugs sound worse than the condition and I am 71 years old. I believe 5-10 good years better than 10-20 poor, sickly years. Any try AZA without side effects. Already taken prednisone for 7 years and finally down to one mg. Staying there.

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I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and I was put on Prednisone and then weaned off for Azathioprine (100 mg) per day. Liver Enzymes starting rising again and was placed back on a prednisone taper for one month (half way through now). I am wondering if anyone else experienced elevated enzymes with 75 or 100 mg. Also wondering about anyone's experience with just 50 mg of Azathioprine. I was diagnosed with PBC in January 2024. Unable to tolerate Ursodiol and was placed on Ocaliva, then liver numbers skyrocketed. Stopped Ocaliva and now I also have Auto Immune Hepatitis. Appreciate hearing your experience with AIH and Azathioprine. Also interested in hearing from anyone who may be on low dose ongoing prednisone. Thanks.

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4 replies
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jeannef2025 | @jeannef2025 | May 28, 2025
In reply to @chopin002 "I have no symptoms whatsoever which is why I don’t want to take the meds. Just..." + (show)
Profile picture for chopin002 @chopin002

I have no symptoms whatsoever which is why I don’t want to take the meds. Just because I have other autoimmune conditions and high liver about 180 they did a biopsy. I feel fine, if I wasn’t tested would never know. Don’t drink, don’t smoke, normal weight, eat healthy. If I start having problems would be a different story.

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Unfortunately if you wait until you have symptoms, your liver is already damaged.

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Mentor
John, Volunteer Mentor | @johnbishop | May 29, 2025
In reply to @boomcan "I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and..." + (show)
Profile picture for Pcn3 @boomcan

I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and I was put on Prednisone and then weaned off for Azathioprine (100 mg) per day. Liver Enzymes starting rising again and was placed back on a prednisone taper for one month (half way through now). I am wondering if anyone else experienced elevated enzymes with 75 or 100 mg. Also wondering about anyone's experience with just 50 mg of Azathioprine. I was diagnosed with PBC in January 2024. Unable to tolerate Ursodiol and was placed on Ocaliva, then liver numbers skyrocketed. Stopped Ocaliva and now I also have Auto Immune Hepatitis. Appreciate hearing your experience with AIH and Azathioprine. Also interested in hearing from anyone who may be on low dose ongoing prednisone. Thanks.

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Hello @boomcan, Welcome to Connect. @justmike started a similar discussion here and may have some thoughts or suggestions - https://connect.mayoclinic.org/discussion/aih-autoimmune-hepititus/.

You might also find it helpful to scan through the comments by other members who have mentioned AIH and Azathioprine in a post - https://connect.mayoclinic.org/search/comments/

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justmike | @justmike | May 29, 2025
In reply to @boomcan "I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and..." + (show)
Profile picture for Pcn3 @boomcan

I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and I was put on Prednisone and then weaned off for Azathioprine (100 mg) per day. Liver Enzymes starting rising again and was placed back on a prednisone taper for one month (half way through now). I am wondering if anyone else experienced elevated enzymes with 75 or 100 mg. Also wondering about anyone's experience with just 50 mg of Azathioprine. I was diagnosed with PBC in January 2024. Unable to tolerate Ursodiol and was placed on Ocaliva, then liver numbers skyrocketed. Stopped Ocaliva and now I also have Auto Immune Hepatitis. Appreciate hearing your experience with AIH and Azathioprine. Also interested in hearing from anyone who may be on low dose ongoing prednisone. Thanks.

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Hi Booncam
I'm interested in talking with you.
What state are you in ?

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Chris Miller | @cpm2731 | Jun 1, 2025
In reply to @boomcan "I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and..." + (show)
Profile picture for Pcn3 @boomcan

I am curious about the dosage of Azathioprine for AIH. Liver Enzymes were highly elevated and I was put on Prednisone and then weaned off for Azathioprine (100 mg) per day. Liver Enzymes starting rising again and was placed back on a prednisone taper for one month (half way through now). I am wondering if anyone else experienced elevated enzymes with 75 or 100 mg. Also wondering about anyone's experience with just 50 mg of Azathioprine. I was diagnosed with PBC in January 2024. Unable to tolerate Ursodiol and was placed on Ocaliva, then liver numbers skyrocketed. Stopped Ocaliva and now I also have Auto Immune Hepatitis. Appreciate hearing your experience with AIH and Azathioprine. Also interested in hearing from anyone who may be on low dose ongoing prednisone. Thanks.

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It does take a little time with azathioprine I was on it alongside with budesonide. After coming off Prednisone. Took about a month for enzymes to come down. Then I had a strange side effect where all my muscles were stiff, felt awful, enough where I quit taking it. Now I'm on 2000mg of mycophenolate. It's working took a little time too. Way better than the steroids, but has its side effects too... Just my input AIH is frustrating Its a mental battle too. Mayo has been amazing

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