Autoimmune hepatitis*

Hello @gering69341, welcome to Connect. There is another discussion in the Transplants group that I think you might want to read through and join in with any questions you may have.

> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
-- https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/

I'm tagging @rosemarya in case she didn't see your post here in this discussion. I'm sure others in the discussion above may be able to answer your questions. The one question I can answer is that a lot of us learn as we go along.

Hello my daughter was diagnosed a year ago at the age of 20. After multiple test and results that didn't definitely say it is autoimmune hepatitis. Even the liver biopsy showed slight signs so that is what the doctor said we were going with cause everything else was ruled out. She was initially placed on imuran after Prednisone for about 2 months. Unfortunately she is intolerant to imuran and can not take it. They switched her to cell cept but even after a year of being on it and then adding low dose Prednisone her liver test have never been normalized. We are frustrated and confused cause even asking questions to our gastro Dr., which we have only actually seen once and that was the day of the liver biopsy, we only ever see the nurse practitioner. I feel after a year we are not getting anywhere. Her liver test are low but not normal we have never hit that. My question to the three is has anyone else had this much trouble and should we be seeking another Dr at this point? Also does anyone know does increased stress cause symptoms to come back briefly until your stress has subsided? She is now a senior in college and the last quarter of her junior year during finals week she had all her symptoms again except the jaundice. Any help or suggestions would be greatly appreciated.

@jtg8771 Hi, I’m so sorry that your daughter is having so much trouble. I strongly suggest another doctor. You really need to have faith in your doctor and feel that he/she is doing everything possible. When I was diagnosed with CLIPPERS disease, my husband wasn’t really comfortable with the neurologist, so he called the medical center at the university. We got a great doctor who directs my care and local doctors follow her directions. It has worked out well. University medical centers have the research and knowledge that’s needed! My sister also has an autoimmune disease and she receives care at University of Michigan. Please try it. Our lives are mostly back to normal, as long as we follow all the rules! Becky

@jtg8771, I want to welcome you to Connect.
I was once believed to have AIH. Since it was nearly 20 years ago, my memory of the details is sketchy. I also had multiple tests when my liver enzymes inducated that something was wrong with my liver. After different liver diseases were ruled out by lab tests, and since I have another autoimmune condition, it was a logical decision by my gastroenterologist to consider the possibility of an AIH diagnosis. I was prescribed prednisone, and then Imuran was added. But the Imuran caused my to bruise and bleed easily. I think my liver biopsy indicated that I did not have AIH, so he sent me to a Hepatologist (liver specialist) to get my diagnosis.
It is not unusual to have trouble determining the AIH.
I would like to share the information about Autoimmune Hepatitis from the Mayo Clinic Patient Care & Health Information>Diseases & Conditions. I like this site because it is easy to read and understand while being very complete and provides accurate information.
https://www.mayoclinic.org/diseases-conditions/autoimmune-hepatitis/symptoms-causes/syc-20352153

As for your daughter, How long ago was her biopsy, and has the doctor provided you with any information about the results? Your daughter should be being monitored with labs regularly. I think you have a right and a responsibility to request to see the doctor (GI) who has specialtu training to address your concerns and questions. Your questions are appropriate and if you are not getting satisfactory care, you ought to look for a different specialist (GI with experience/training in liver disease or a liver specialist.

What insights did you learn from the AIH information? What questions do you have? I look forward to hearing from you.

@gering69341, You are absolutely correct that we learn as we go along. I was diagnosed with a rare liver disease, myself, (Primary Sclerosing Cholangitis, PSC). Early on, my doctors also told me that every one is different with the symptoms and responses to the medications and treatment. It can be frightening and lonely in addition to living with miserable symptoms. I am happy that you have shared some of your story. Would you care to join me in the Transplant Discussion Group? Here are somr discussions that I think will be of interest to you because you can read about, and meet others who are sharing about their pretransplant experiences.

Thank you for the suggestion. Unfortunately the Dr we see would be the same one as the university gastroenterologist. He is the liver specialist in our area. I think on our next appointment we will ask about see the Dr himself. Then go from there

Here is what I have done before.
I have had good results by telling the nurse or assisting caregiver my big concerns in advance. I have always had satisfactory results.

Yes she is going every Six weeks for lab testing and the biopsy was a year ago. He did say that it did show a very slight AIH but also showed something else that we then went in and had an endoscopy done to rule that out. So that's when he went with just the AIH. I have voiced my concerns through this whole year and we just don't get anywhere. I fell like I don't know enough about this to fully feel comfortable. The practitioner we see just gives us the same answers over and over about getting the liver enzymes normal then we will go from there but after a year they still are not normal after increasing meds and everything he can't seem to answer these questions.

I was diagnosed with AIH in 1985 at the age of 12. I was originally treated with 120 mg of prednisone and 60 of 6-MP that became known as Purinethol. I went through many periods of lulls and flares throughout my adolescence. I had an awesome pediatric hepatologist in Fargo that took charge of my care until I got to the point that I needed more comprehensive care than he could provide. I had splenorenal shunts done in 1993 at the University of Nebraska, which bought me a little over a year before needing to be put on the transplant list. I transferred my care to Mayo in January 1995 and received my first liver in April of 1995. I subsequently needed a second liver due to idiopathic reasons in 2006 when the first allograft failed. I received my second liver in May 2007. In 2009 I experienced antibody-mediated rejection and underwent plasmapheresis and IVIG therapy. In 2010 my kidneys failed due to the antirejection meds and in 2012 my mom was my living donor for my kidney transplant.

@rosemarya Hi Rosemary last week for me was my miracle. As you know l been dealing with first viral encephalitis, then AE and then they said HE . And my doctor is at the Mayo you and the other mentors have been helping me. Well the Lord blessed me with a new cardiologist and last year l was diagnosed with bradycardia. I was in the hospital and doctor who comes from the island told me do you know you have bradycardia? I told her no but my doctors had me on high blood pressure med, diuretic and beta blocker. So l kept falling and passing out. Then around Christmas my heart rate went into bradycardia and l went to the hospital and they said we can't doing anything for you, you have too many allergies. So then my private care doctor put me on a new blood pressure med after the different recalls and l went into tachycardia. I was suck with bronchitis from the med. So l just went to a different hospital in our state and the doctor saw me in tachycardia but he didn't know what to because after he had the nurse drawn blood it went back to normal. So he said l going to refer you to a neurologist and so he did. So when l got the referral l was booked with 2 cardiologist on the same day. One from the hospital my previous one was and the new one. So l said Lord l think l going to see which one l think will listen. Well l liked both and the both were listening. So one had my blood drawn and the other one gave me a heart monitor. So l said Lord they are both doing what they should now how do l.decide. Well when you want an answer from God be prepared. The one who ordered the blood called me on Saturday not his receptionist the doctor himself. Well that is impressive to me. I worked in the medical field and that's not the norm. He said l want you to go to the er stst one test came back normal and you might have a clot. Well that's not what you want to here after being with your friend. So my husband and l.went and the doctor was informed what test my cardiologist wanted but instead he looks at my chart from last year with my neurologist and tell me my potassium levels were low. I told him l was not sent for that but he said he will run test over to see if there is anything. So he sent me home. My cardiologist receptionist called on Monday and the doctor was furious and said l do it myself. So l hsd test done. And l went into tachycardia in his office. So he did the test he wanted and it came back normal because he couldn't catch anything on a eeg. So just last week l was to be admitted for a week for extended eeg to see if l.have seizures. That was a mess too but while l was in the hospital my heart rate was mostly in bradycardia. Then on Tuesday my heart rate started go up and the nurse called my neurologist and he said get the cardiologist. Next thing l see is 4 nurses a crash cart and my cardiologist. And he told me try to take deep breaths. I did but my heart was slowing down. So he said to me l going to have to give you a med and then shock you and stop your heart and then it will go back into rhythm. But doctors after always tell if it don't. And after hearing the chances of that l so Glad l have a heavenly father. I said now Jesus we can't do this.He was getting ready to tell the well are we ready and all of a sudden it went back to normal rhythm. Because he couldn't believe his eyes. He told the nurses it went back. And l saying Thank you Jesus. My rate had went up to 185. It happened again the next day. He came back and said l have to think l got to get you help. If l can't then l.will give you meds and we discuss what to do when you come to the office. This is the miracle. The hospital l was in the doctor was working Thursday and Friday and off on vacation for 2 weeks. So my cardiologist had another surgeon and he said he was the one of the best in the US but hes was in the hospital l.have some problems with. I writing a book so one day you will hear about it. So l told the nurses my concerns and the understood. So they told my doctor and he did too. So he asked me again do you trust me l said yes. Well this Dr had a cancellation on the Friday the day l was to be discharged from the eeg with my neurologist. They transferred me on Thursday to the other hospital. And on Friday l met this surgeon. He was the best he had his paper in his hand and he had drew pictures of the heart 4 quadrant of the chest. And he showed me exactly what he was going to do. And it was a team of doctors. I have definitely with anesthesia that because we are still using verses. The anesthesiologist said she hates that drug because what it does to patients minds. It was they said 10hr surgery. This past week l saw him and he was so happy to hear my voice. He said how are you feeling. I said l am so much better. He told me l came to the hospital but you were already in surgery but l told you l would come and l did. Really l did. I said l so blessed and l owe it first to Jesus then you. And l been telling everyone how just one doctor who cared. Did everything humanly possible he could and without Christ l.woildnt be here or still dealing with tachycardia. The surgery is heat ablation. I just so Thankful and l going to make sure my doctor knows it. I having a shirt made and his name and the other doctors. His office and the Hospital and unit will be on it. I just can't stop Praising God!!! You know God said he will never leave you are forsake you. One preacher said something God allows to gi throw just to bless us. And now l off of all my meds for the heart. Only think l.taking is for my liver and my acid reflux. Which l have to eat differently. I thought l.would share. And they were talking to the liver doctor at mayo clinic. So l wrote him to see if he needs to check my liver. And l just can't keep from telling people about the mayo clinic, livers, AE and doctors who really care. Thanks Rosemary l keep you posted