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Autoimmune Hepatitis
Hello, all. Just got my biopsy results - I have AH. I’ve just spent some time reading about this (it’s Saturday, waiting for Monday to call my GI doc and get a follow-up appointment), and am not a happy camper.
Background: liver enzymes first showed elevation back in 2019 when I lived in a different state. I had an ultrasound, lots of blood work, and changed to a “healthy liver” diet. The enzyme levels came down a bit, but still not normal. That doc suggested that probably had fatty liver, and I went about my life. Ended up leaving that state and traveling the country (USA) full time for 3 years. We settled in this state 2 years ago, and it took a while to find a really good GP. First physical with her, blood tests showed enzyme elevation. And we were off to the races with tests. Ultrasound and MRI showed absolutely nothing wrong with the liver or any abdominal organs. Needle aspiration biopsy shows AH.
I have zero symptoms. No fatigue, aches, jaundice, stomach or bowel issues, appetite issues, etc. I’m 68 years old and in excellent health otherwise. I have some mild to moderate arthritis, which I only found because I had torn my meniscus and had an MRI of the knee. After a cortisone injection, I’m back to brisk walks, hiking, ballroom dancing, etc. I am on zero medications, and all I take for supplements are calcium, omega-3, D and B12. After all the reading, I presume I will be put on prednisone and Azathioprine, which is just throwing me for a loop! I imagine I’m going to transform from feeling awesome to feeling like a train wreck … bloated like a Macy’s parade balloon, having to mask in the grocery store so I don’t catch every airborne illness, aching, risking diabetes, cancer, and other horrible things all because of this invisible disease.
I’m curious to hear from others like me … super healthy in all respects except this … and to know how your treatment and illness proceeded. I hope to hear that I’m worrying for nothing, but I tend to think that’s not the case.
Thanks.
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This may be the case, but if you fell fine why are you having all these tests and taking medications? As far as Prednisone goes, be cautious, long term use can make you have Bloated Moon Face and effect your joints years later if given larger doses for extended time frames! Be cautious!
Yo fui diagnosticada de Hepatitis Autoinmune hace quince años. Sintomática
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Hola, me llamo Mar y hace 15 años me diagnosticaron Hepatitis Autoinmune. Soy de España
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1 Reaction@bbmayo My liver enzymes have been testing high for a few years now. I have done all the testing, but kept resisting on the biopsy because of the fact that I have absolutely no symptoms. Of course, the doctors have been impressing upon me that NOT having symptoms is not uncommon with liver issues, and sometimes by the time I start feeling sick from it, the disease has progressed. I relented and had the biopsy. Of course, the results came back thatI have AIH. I am not taking the meds yet, but I’m sure that’s where this is going to go. It’s a long holiday weekend in the US (don’t know where you are).
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1 ReactionHi! I'm sorry about your diagnosis! If you're not responsive to the Imuran and Prednisone, you might consider Mycophenolate (Cellcept). I was diagnosed in June of 2021 by a Transplant Hepatologist and treated. with Budesonide and Azathioprine (Imuran). No luck. Remained on AZA and Budesonide was replaced with Prednisone. Still, no luck achieving remission, but my enzymes weren't terribly high (mid to upper 100's) Eventually, I was placed on Tacrolimus, which was terrible for me. I noted a few people on the AIHA group who mentioned Mycophenolate and found a recent-ish AIH study by Hepatologists in Athens, Greece that suggested Mycophenolate as a more successful first line therapy. I wish I'd known earlier, as I finally started it 3.5 years in and it worked immediately. 250mg AM/PM. Finally off steroids after 4 years. I now have major osteoporosis at age 52 though I've been a decades long health nut-weights, yoga, healthy diet. Good luck to you! I hope you achieve chemical remission soon!