Autoimmine Hepatitis +stage 2 liver cirrhosis/fatty liver

Posted by MyKai17 @mydiamondsx8, Apr 10 9:36am

I have AIH +stage 2 liver cirrhosis+fibromyalgia,(diagnosed in Sept 2023) and a nodule on my parathyroid which will be surgically removed in July, and high levels of PTH. I am not on meds at the moment for AIH because Azathioprine & Budesonide make me ill to the point I can barely move and I am in severe pain,Prednisone does not help either. Recently I am experiencing right flank pain from the liver that wraps around to the back, and inflammation on the abdomen to the point I look pregnant, and I can hardly bend down. Anyone experiencing any of these AIH/liver symptoms?

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I battle a fatty liver and the answer for me is keeping extra weight off. If I gain 5-10 lbs., the alkaline Phosphatase is elevated. When I lose weight, it comes back down within normal range. Praying and wishing you the best.

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No but i hope you find a pain reliever that works for YOU!! I have a bit of pain in my neck up to the ear mainly on left side continuously and it bites.

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I was diagnosed NAFLD, PBC and cirrhosis at age 69 after labs, ultrasound and liver biopsy. Doctor said I probably had it for years and I am asymptomatic so no pain back then. I was prescribed Ursodiol for my liver I have sleep issues so tired a lot. You should see a hepatologist if you have not yet, especially with your tummy swollen. We cant cure cirrhosis with a pill but with healthy diet and exercise we can feel better. Take care 💚

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I would recommend seeing your doctor, the liver specialist to rule out ascites from the cirrhosis. That’s an accumulation of fluid in the abdominal cavity that makes the belly distended and uncomfortable. An ultrasound can be done to determine the extent of fluid accumulation and it can be drained if excessive. This should be done ASAP. Shortness of breath and swelling in legs/feet need attention if present as they are part of this same process. I’m sorry you are experiencing this and hope you get the help you need. Our immune systems can cause such damage when it turns against our own bodies. It will be great when scientists figure out how to prevent these autoimmune disorders!

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I was diagnosed with AIH, PBC and celiac disease, all autoimmune diseases in Sept 2023. I had suspected fatty liver issues for nearly 20 years but all my doctors brushed it off and said everyone has a fatty liver. Now at age 60 I have stage 3-4 cirrhosis of my liver and need a liver transplant. I hope to help at least one person by talking about my diseases so they can catch it before they need a transplant.

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@cindy358

I was diagnosed with AIH, PBC and celiac disease, all autoimmune diseases in Sept 2023. I had suspected fatty liver issues for nearly 20 years but all my doctors brushed it off and said everyone has a fatty liver. Now at age 60 I have stage 3-4 cirrhosis of my liver and need a liver transplant. I hope to help at least one person by talking about my diseases so they can catch it before they need a transplant.

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Also was overweight for 20 years, every 6 months I had a physical and Dr always said my liver enzymes were high and kidney function low BUT he was not concerned! After 6 years of this he sent me to a gastroenterologist who also did labs, I was told my bilirubin was high and needed a liver biopsy. Now I see a hepatologist as I also have PBC with stage 4 Compensated Cirrhosis DX in 2021 with a Meld score of 7 which is now 10. I changed my diet drastically to a Mediterranean food tweaked for my liver. I lost 98lbs now too thin so added more food. I’m still asymptomatic and doing well, like you I try to tell everyone to be aware of this disease, and ask questions!!!

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I have Autoimmune Hepatitis and PBC. As someone else mentioned I probably had it for years. I got very bloated, look pregnant and then had my ascites drained a few times. I started feeling really sick and went ER and my ascites was infected. Then they found out I had HCC, liver cancer. Long story short, I was given strong antibiotics to get rid of my infection, went on the transplant list and had a liver transplant 2 years later. I am now 2-1/2 years post liver transplant and doing well. The infection was a blessing in disguise because we found the cancer soon enough before it metastasized. My words of wisdom are: Get things checked out with your doctor. If not satisfied get a second opinion.

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