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Recently diagnosed!
abouttwodays posted:
Hey everybody, I have recently been diagnosed with AIH. Long story short, I have had mildly elevated liver enzymes for at least 5 years. My doctor had run hep A, B, and C tests a few times but since they came back negative, she just passed it off as nothing even though I had told her I had URQ pain. I moved to FL and started seeing a new doc last Oct. because of the pain. U/S showed coarse texture to my liver, CT showed enlarged liver and spleen, and blood counts were kinda wacky. I was sent to a GI specialist who ran a bunch of tests that all came back negative. I moved on to a hepatologist who ran more tests (again, all negative) and did a biopsy. My biopsy showed severe chronic hepatitis (grade 4) and bridging fibrosis with pericellular fibrosis (stage 3), and features of bile duct injury. It said this supports the diagnosis of AIH, though I do not have any positive autoimmune markers.

So I have started on 3mg/day of Budesonide and have been on it for about two weeks now. We are trying this instead of prednisone to avoid side effects. No side effects here, but the pain from my enlarged liver and spleen has not subsided, I'm still tired all the time and itchy. Appetite is shot which is sooo unlike me lol. I never knew my extreme fatigue was due to my liver. I always just thought I didn't get enough sleep or needed to slow down or something. I just didn't understand how just about 7 years ago I could do so much and now I can do so little because I'm just too tired. It's frustrating! Sometimes I feel like my mind is going, too. I just can't handle being so tired sometimes and I start to have meltdowns :[ Now I know how my 4 year old feels when she has a tantrum from being overtired!!!! Haha.

My GI doc wonders if this is not AIH though. He is concerned that I grew up in an area where there was a nuclear accident (Simi Valley, CA). There was a partial nuclear meltdown, thought to be the worst in US history, and to my knowledge it has yet to be properly cleaned up. So he kinda wonders if this could have something to do with that, but I don't know, I would think that's kind of a long shot? Guess we will have to see how I respond to medication and how all of this goes!

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