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Posts (8)

Sep 15, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

Yeah that is what our first Dr said. Oh you'll be on meds a few years then you'll be fine. Then she had an intolerance to Imuran which is the first line of meds then switched to cell cept which is the second line of meds and tolerated them but after several months liver enzymes were not getting better and his response then changed to well if it doesn't get better she will have to have a liver transplant. That's when we started looking for a new Dr. We had also gone to a conference about AIH and learned there were other meds and when our Dr was presented with them he bucked it and just said those are post transplant meds and don't get used pre transplant. He reluctantly started her on tacrolimus after doing some research and finding out oh yes they are using it. New Dr informed us of stuff we didn't even get told about some of her test done a year prior like how much damage was already done to her liver and was so much more knowledgeable about everything. Oh yeah and within a week of being on Tacrolimus her liver enzymes were normal and so far have stayed normal for 2 months. She is almost completely off Prednisone.

Sep 3, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

My best advice to you is find that Dr who has lots of experience with autoimmune hepatitis cause when we finally asked our GI he stated we have seen our fair share. Wouldn't even answer out right and didn't know of the more updated treatments that are now being used if the first two meds don't work. So ask, ask and ask again how much experience your Dr has with this disease.

Sep 3, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

She does have fatigue and has even had to not go to classes in college to sleep some. Nausea yes but more than that the just not wanting to eat and stomach hurting. But I have noticed since she switched to tacrolimus for treatment liver enzymes are finally normal and she is 2.5 mg from coming completely off Prednisone. We chose to seek a second opinion on treatment and are now with a very knowledgeable Dr. Out of Houston. The thing that upsets me most is we waited so long to go to someone else. With the enzymes normal she has not had as many boughts with nausea or stomach issues but we will see how things go with her back in school and more stressed with classes. Thankfully this is her last year and I'm hoping if enzymes stay normal she won't have those really bad days she can't even go to class.

Jul 28, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

Yeah took us a long time to really find someone to talk to as well. My daughter was hospitalized for 3 days and had a colonoscopy, endoscopy, and liver biopsy. When she went into hospital her liver enzymes were in the 600- 900 range. These are the alt, ast, and alkaline phosphate levels. Multiple other lab test that were confusing the Dr and after basically ruling everything else out and the hepatitis panal finally came back is when they went with the AIH. Long process to diagnose then she has had Labs every 6 weeks for the last year. Three meds later I think we finally found the one that is working for her.

Jul 28, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

Sorry to hear about what your daughter is going through. My daughter was diagnosed with autoimmune hepatitis a year ago. This is a life long disease but is treatable. Everyone responds differently to treatment, some are able to come off meds while others stay on meds their entire life and then others require liver transplant. We recently went to a conference geared solely toward autoimmune hepatitis and learned so much. You can find lots of info on the mayo clinic web site but I also suggest looking at the autoimmune hepatitis association web site. We are still very new to the disease and are still learning. Hope you find the answers and your daughter feels better.

May 29, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

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.

May 29, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

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

May 28, 2019 · Autoimmune hepatitis* in Autoimmune Diseases

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.