Autoimmune Hepatitis and remission?

Greetings to someone with this unusual disease. I was diagnosed with Autoimmune Hepatitis in 1996; at the same time I was diagnosed with Sjögren's syndrome. Treatment initially included aziathropine (sp) and prednisone...tapered off over three months. My liver function tests returned to normal, biopsies appeared normal while I continued with the aziaprothine. In 2007 I was diagnosed with Non Hodgkin's lymphoma and taken off aziaprothine. I received chemo with Rituxan, followed up with maintenance Rituxan for seven years. Neither the Autoimmune Hepatitis or Non Hodgkin's has returned, although I have developed other immune issues..likely autoimmune. Although my father had Sjogren's and Non Hodgkin's, he never developed Autoimmune Hepatitis but did have temporary bouts with RA and Raynaud's. It's a strange disease, but as you can tell from my tale, hope is possible.

Hi Nellellen. Thank you for sharing your experiences with autoimmune hepatitis. This is really helpful. I was diagnosed about three weeks ago and am asymptomatic so just wanted to get a sense of what this disease can look like.
It sounds like treatment was well considered and effective for you. That's great to hear.
I'm curious whether you have had any serious long-term effects of being on the aziaprothine as it looks like you were it on it for awhile?
When I was diagnosed, they started me on 20mg of prednisone (they wanted to start at 40 mg), which I have been on for three weeks, and they will check my enzymes next week. It looks like I have advanced fibrosis (stage 3-4) as a result of not knowing I had autoimmune hepatitis. Because I have been asymptomatic, I would never have known. This was caught incidentally through general blood work.
What kind of symptoms did you have?
Yes, it's great connecting with others who have this. I had never even heard about autoimmune hepatitis until three weeks ago!

A few years ago, I woke up one morning, and I had gone yellow. I really should have known that I was unwell as I had been throwing up quite randomly for a while. My doctor said I should go to hospital, and I didn't want to but in the end, I was admitted for about a week. My relevant bloods were sky high, and looking back I'm surprised I survived. I didn't get on with the doctor in the hospital. He kept giving me different diagnoses and was quite unpleasant. The whole hospital experience was funny in hindsight. They were short-staffed!! one night I woke up to find another patient snuggling up to me in bed! Whoa!! I called the nurse who led the patient back to her bed, and lo and behold, a few minutes later she was back in my bed. Then a drug addict came in, (five bed room) and when everyone was asleep, she went around stealing whatever she could get from other patients. We had to call the police in the morning and she was taken away. Then another night, there was a full-blown fight in the corridor.....all in all like a battle zone. eventually, I moved to the care of another hospital in another town, and its been fine. I have just been pulled off Azathioprine, because my white blood count is abnormal. I have some liver fibrosis, but everything has generally improved, and I think I am being well monitored. I never touch alcohol since, as I think that would aggravate everything. I know azathioprine can affect white count, but generally I am well. Funnily enough I seem to have a few additional conditions alongside this one, and I was convinced I had sjrogens, but test said No. I understand that lymphoma can be a by-product of this illness, so I keep an eye on that. Stay well all!

Good morning,
Other than extensive fatigue, I had no other symptoms associated with the AH. Sjogren's was and is another story. If I'm remembering correctly, the liver does regenerate itself. My liver enzymes have been in the normal range for a very long time. Although there is debate about this, my oncologist believed the aziaprothine was A contributor to the development of cancer. Emphasis on A...meaning one. It was eleven years between my diagnosis of AH and NHlymphoma. That's eleven years of aziathropine. But, in my case, the greatest contributor to the cancer was the Sjögren's syndrome. Approximately 7-10% of those with SS develop lymphoma...and both my Dad and I developed both.
Remembering back, I think I was taken off the aziprothine once to see if the liver enzymes might remain normal, at the time it didn't work. You might consider doing that after some time...I'm not a doctor, but eventually the liver was not the subject of the autoimmune attack. Also, if you haven't heard this, this is very good advice. Don't get live vaccines. For whatever reason, live vaccines can initiate an autoimmune response. Good luck. We're all different, but it's great to share with people facing the same rare disease...there is hope.

Good luck to you. I hope you read my other post to humbug. (#1 Dicken's fan here). Your experience getting diagnosed is not unusual; normally it takes a long time. My diagnosis of Sjogren's led me to the diagnosis of AH, because of the blood tests run after the biopsy of the mouth tissue. Are you on prednisone? Initially I was on high doses and eventually tapered off, although it took at least six months to get rid of the side effects. For me, the road has been somewhat different than what you read. I no longer have AH, but have developed several
autoimmune conditions that flare for a time period and then eventually go away. Fingers crossed. This happened with my Dad as well. I laughed at your experience and thought it sounded like my life...I'm usually on the wrong side of statistics...but this helps keep me focus on my issues and how to manage them.

Thanks for sharing your experience, Marijo4. That's quite the hospital experience with a full dose of drama to go with it! I'm sure it wasn't funny at the time, but what a great attitude to have in hindsight.
Yes, I have also read about azathioprine and white blood cell counts, so thanks for providing your personal insights and experiences re: possible connections. I will keep all these "tips" in mind for my future appointments given that my diagnosis is still only about three weeks old. I found your comment extremely helpful!

Nellellen: That's wonderful that your liver enzymes have stabilized for the long haul. Hope the aziprothine was not a major culprit in the cancer given that it seems to be a common treatment for autoimmune hepatitis.
However, it sounds like you have been in good hands with healthcare professionals in treating your various conditions; that's so important.
Yes, I had heard to stay away from live vaccines. Since the diagnosis, I've actually now become even skeptical of flu and COVID vaccines though I realize they don't fall into the category of live vaccines.
Yes, I am getting a wealth of information re: what this disease looks like on this discussion board, and it is great to connect with people like you who have personal experience with it. I really feel well prepared to discuss options with my healthcare team as a result.
Thanks so much for all your insights into this condition. It would be great if my enzymes have been lowered in three weeks with the moderate dose of prednisone. Fingers crossed!

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.

Azathioprine did the same for me got my numbers down but everything hurt.. currently on cellcept but still have a rollercoaster with my numbers also on Budesonide when I flare up. Hate taking the meds wishing there was a natural way for this to go away!! Been frustrating for years!!