Autoimmune Hepatitis
Posted , 3 users are following.
Started getting sick 2 months ago. My primary tells me I have hormone problems since I had back to back surgeries in 2016. After going to hospital for vomiting and dark orange urine I find out I have liver enzymes Alt is 1533 and Alt is over 1029. They did Ct scan and ultrasound and sent out blood work. In meantime I go to a hemotalagist to get more blood work because of joint point and they tell me I have Lupas. Came home hysterical.
That Monday my Gastro and a 2nd opinion Hemotalogist said NO Lupus. But suspected Hepatitis Autoimmune. I am very upset. My steroids don't let me sleep .. also had liver biopsy done too and MRI. I am trying so hard to stay positive... lots of praying... changed my eating and no GMO and Gluten Free. This has been tough. Started walking today 20 to 30 minutes a day. Taking vitamin D and Probiotic and praying slowly he will wean me down on steroids. Also on 50 MG of Imuran. Can you all tell me how you all are doing? Love to hear some positive news or what else I can be doing. Thank you
1 like, 22 replies
amy_57955 nidia53744
Posted
Hardest part for me was no more alcohol .
amy_57955
Posted
I'm curious, did you get the results of your liver biopsy?
What are your liver enzyme numbers now?
Praying for you!
nidia53744 amy_57955
Posted
Hi there😊 No biopsy yet. Had too much inflammation. So went to a Hepatologist Friday And he's ordering the films. He wants to look at the actual liver biopsy slides. Also ordered a US Doppler liver Ultrasound which I did Friday and tons more blood. He wants to make 100% percent sure it's AIH. I am sure it is. I have had flares and pain. Still crying. Working hard on being positive. I am trying so hard to deal. 😢 I go every Monday to Gasto Doctor to get blood reports and more blood work. Last week they were 464 and 237. I got discouraged. He said they can go up and down. I hate these meds but I know I have to take them. It's going on a month since I was diagnosed and started treatment. I pray everyday I start feeling like me again and start living again. I am afraid of getting sick cause of Aza meds. 😢 Missed talking to you.
amy_57955 nidia53744
Posted
I am pretty sure it took me 6-8 months (could have been a year) of being on meds before the numbers were back in normal range. So Give it some time.
I also know it took several months before they gave me a definitive diagnosis to even start medication. They have to eliminate everything else because there's not a definitive test.
So relax and know it can be controlled. It's a blessing you found out and can be treated.
But I am still confused if you had a liver biopsy. You mention not yet because too much inflammation but then you said there are actual slides? If you had a biopsy I'm thinking that it can tell you what stage of inflamation /damage to the liver. Mine was stage 3 .
Remember your liver can heal itself like your skin. No other organ can do that.
nidia53744 amy_57955
Posted
Yes had biopsy July 17. But all I get from Doctors is it was too inflamed to see .. so the Hepa Doctor is ordering the actual slides to let pathologists read. He said I dont want to stamp you forever as being AIH so that's what he wants to do first. In meantime it's eating real healthy. Organic GMO gluten free and drinking plenty water with lemon. Also I was Vitamin D low. So other Doctor put me on once a week 50,000 ICU. I believe that's a lot 😳 It's a prescription. I am trying so hard to do everything right. A year it took you? I hate these pills make me feel awful. How r you?
amy_57955 nidia53744
Posted
I understand. I am very well -i'm 12 years from diagnosis . Still take the Azathioprine, have no side effects and they tell me it shouldn't have any negative effect long term. You are under good care and they will get you stabilized but give yourself time. I'll try to figure out how to message you privately to get updates .