Liver Diseases Support Group: Let’s connect

I am so happy for you.🥰

Sorry, I am new to this type of messaging.
Wow!!! Keep up with the awesome care for yourself.
I will be meeting with a Liver Specialist soon, Will be calling to get an appointment today.

Hi. My name is Laura. Have recently been diagnosed with severe fatty liver, primary biliary cholangitis and autoimmune hepatitis. I also have an autoimmune disease for 18+ years called Cogans Syndrome that affects my vision hearing and balance. Currently am on 32mg methylprednisolone which covers the AI and Cogans, and Ursodiol for the PBC. They are trying to add Azathioprine but had previous side effect of leukocytosis. They are running some blood tests that will give them better information on my body’s ability to metabolize it.
This liver issue is all new to me. Would love to connect with others and hear their journey

Welcome to Mayo Clinic Connect, @lmpa65. Good to hear you have been diagnosed recently so you know what you are dealing with with the severe fatty liver, primary biliary cholangitis and autoimmune hepatitis. That sounds like a lot to contend with.

Hoping that in this discussion you will get to chat with members in this discussion such as @jl42 @elouise @trishwrite1 @mayo99824 and others so they can tell you about their journeys with liver disease.

When will your blood tests occur, lmpa65? If the azathioprine is not an option after the blood test results, what is the alternative for you?

They drew my blood yesterday. The TPMT test I am sure gets sent off. I’m guessing but am not expecting to be a quick result. Yesterday’s blood test did show that liver functions have improved. Certainly not normal but better nonetheless and I’ll take that. It does mean that the evil steroids are at least helping. It’s a double edged sword though because they mention the years of steroids I’ve been on due to the other autoimmune disorder that I have (Cogsns syndrome) has caused the fatty liver along with many years of methotrexate.
I’m not sure what is next if I can’t take the azathioprine

The 1st potential notice of PSC was about 50 years ago. My live enzymes were off the chart when I had my annual physical. There was no determination that I had PSC and my primary care doctor (who was really worthless) just told me to avoid alcohol. So I stayed away from bars and liquor stores. This went on for a few years and then I relocated from AZ to Colorado and my new primary care doctor looked at my liver enzymes and immediately sent me to a GI doctor who had spent a year at Mayo doing research on liver diseases. Through testing and finally a liver biopsy it was determined that I had small duct PSC. That was about 23 years ago. Now for whatever reason, all of my liver enzymes levels are in the normal range and have been there for maybe the last 4 or 5 years. I do, or did suffer from a severe chronic case of IBD and 12 years ago I had colorectal surgery and now have the J Pouch.

I am newly diagnosed with autoimmune hepatitis and biliary cholangitis and severe fatty liver I have had another autoimmune disease cogans syndrome a firm of large vessel vasculitis, diagnosed about 20 years ago. I have been on prednisone a whole lot over the years as well as methotrexate. I was told that the steroids and methotrexate have contributed to the fatty liver. My dilemma right now is they started me back on methylprednisolone 32mg a day to help with the AI and Cogans. It is gelping, my liver functions are trending downward. They want to start azothioprine as it helps both issues Only problem is I had a huge decrease in my white blood cell count when I took it in the past. They drew some blood last Monday to run a test that will tell them how I metabolize azithoprine. Until then the steroids continue and no sign of a tapper in my near future.
Anyone else on Azothioprine?

The TPMT test showed normal metabolism. I took my first dose of azothiropine this morning. I’m having nausea but I have nausea every single day so I think I’ll be ok if that’s the only side effect I get. My liver enzymes are trending downward on the steroids so that’s a plus. I just want to be able to get off of methylprednisolone as soon as it is safe to do so. I see my rheumatologist in August. She will recheck my labs then. I’m also on ursodiol for the primary biliary cholangitis.

@lmpa65, my name is Julie. I was diagnosed with pbc in June. I also have fatty liver disease that comes and goes, depending on my weight. And I have lupus and Sjögren’s syndrome. I’m also feeling a little overwhelmed. For example, I’m in a lupus flare now. My sed rate is over 90 and my rheumatologist is now somewhat limited in what she can prescribe. When I was first diagnosed with lupus in 1991 I learned a lot from online forums such as this. Hopefully, you and I can learn good stuff as we figure out our new complex medical profiles.

Hello all,
Over the last month, I have dealing with a lot. Started about a month ago was at work and had severe muscle weakness in arms and legs. Went to ER did abdominal ultrasound and said I had enlarged liver and diagnosed me with mild steatohepaitis. Bilirubin in blood was 2.0 at time. All other lab blood work and lfts were consistent with fatty liver. Since a month ago I have had extreme fatigue and muscle weakness. I have no appetite and have lost 35 lbs in month. I have developed in last month issues with dry mouth and trouble sleeping at night. I have constant brain fog. I saw hepatlogist and they did abdominal CT scan with contrast and he said my liver is smooth and normal and only shows faint lines of fatty liver. Also performed fibroscan and my results from that were 5.7 and 277. Which he said were consistent with fatty liver and I requested liver biopsy and he said it was not necessary due to current lab and blood test results. He stated all of my symptoms : the brain fog, muscle weakness, are not liver related and to follow up with PCP. My family thinks I am making all this up and it's all in my head. I am worried that all these symptoms are related to end stage liver disease. Has anyone had any experiences like mine? I am alone and very scared and looking for support and answers? I am a 38 year old male with a wife and 2 young kids at home.