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
I was diagnosed 11 years ago with autoimmune hepititus and I feel great! I was initially put on prednisone for several months maybe a year can't remember, along with Azathioprine ( imuran) . This brought my liver enzymes down very fast from what I remember . Probably within first year they were close to normal. I had no side affects. I continue to take imuran and enzymes are as low as 17-24.
Have you been retested since starting your meds?
nidia53744 amy_57955
Posted
I go every Monday. So next Monday I go again. I am hoping they will go down even more. My depression is sunk in. I am so happy to hear how good you're doing.
nidia53744 amy_57955
Posted
amy_57955 nidia53744
Posted
No need to get upset about this . The medications work! But I do know how you feel. I was very upset, had three young children at the time, But the meds worked and I had appt every month then every 3 mth. Then every 6 maths just to check bllodwork and once they find the right dose to get it stable, your body won't be attacking your liver. Plus continue organic, non gmo no processed foods.
Do you still feel sick?
nidia53744 amy_57955
Posted
I was sick for like 2 months with nausea and food made me sick. I couldn't stand the smells of certain foods. Gastro Doctor put me in hospital when I really couldn't eat. Started meds in hospital and felt better next day. No liver biopsy results yet. Praying for good answers. I cry so much. I also had joint pain comes and goes. I know alcohol is out of my life. I started eating all Gluten Free and organic and No GMO. My urine is better drinking lots of water. I am just scared 😢
amy_57955 nidia53744
Posted
There are so many more diseases that are worse. This hopefully will just mean you will be taking meds but feel perfectly normal. I am 57 now.
nidia53744 amy_57955
Posted
My dosage is 30 for prednisone and 50 for the suppression. I am 60. Just became a grandmother 20 months ago. I know my mind stops me from being joyful. And I know I should be grateful and thankful.. I did have MRI. Ct scan and ultrasound. Didn't say anything bad about those. Not sure what they look for on those test
nidia53744 amy_57955
Posted
I hear the liver can heal itself? Do you have other tips for me? I appreciate everything you tell me 💕
amy_57955 nidia53744
Posted
Do not worry about this . It's controllable . Keep in mind worse case scenerio is a transplant and that's unlikely . I have only met one other person with AH and she is much younger than me and her liver was failing in her early 20's. She had a transplant and has been perfectly fine, raising children. And yes! The liver is the only organ in your body that can rejuvenate . Mine has with the medication. They told me early on that this disease should not affect my life span. Do you feel good about your health care? My intern sent me to a Gastroenterologist once he took my liver enzymes twice and it was so high. It seemed like it was 6 mths before the gastroenterologist officially diagnosed me. It's a process of elimination since there is no test to determine you have it., once I got the results back from my biopsy and results Eliminating other things . Once I knew AH I decided to switch to The Baylor Liver Center to be monitored by specialists in the event I would ever need transplant. They said very very unlikely that would be needed.
amy_57955 nidia53744
Posted
I juice a lot now. And can tell you my enzymes are at their very best when I eat health. Packaged gluten free products are almost all junk btw. Eat fresh organic meat vegetable fruit nuts.
Keep me posted on your biopsy results. This is the worst you will feel and worry. It's only going there gett better from here.
Also they told me I had probably had AH since I was 15 or so but didn't know it., given the amount of damage. So the good news is you found out and can do something to heal.
nidia53744 amy_57955
Posted
Yes am very happy with my Doctor. He's the only one that took over. Put me in hospital because didn't want me to wait for liver biopsy and wanted to get me started on treatment right away. One doctor said you have lupus here's a script for plaquenell and come back in 3 months and that was it. Thank God I didn't listen and went to my Gastro guy and he took over. You have been such a help to me. I have been confused crying and anxiety off the charts. I just want to enjoy my life and not worry.. its all new for me. I am trying so hard to be normal everyday and forget about this. I also take vitamin D and probiotic. Is that ok. Or should I take something else?
nidia53744 amy_57955
Posted
nidia53744 amy_57955
Posted
I will keep in touch with you. It seems like it's taking forever to get results back. I am so happy you're doing so well. You're a inspiration to me. I guess anyone can get this. 😢
amy_57955 nidia53744
Posted
I take thyroid meds too due to Hoshimotis also autoimmune .
Believe me I understand your anxiety. I am the worlds worse at getting worked up and even panic attacks when it comes to times like this . Hand it over to God because he is going to take care if it and doesn't want you to worry about it. It's getting handled !
Yes take probiotics and I can tell you where to get gluten free supplements . Goodnight !
nidia53744 amy_57955
Posted
Ok. Goodnight. Yes let me know where to get Gluten Free vitamins. Thank you so much. 💕
nidia53744 amy_57955
Posted
I should get my results tomorrow. I am praying really hard. Last week my liver enzymes came back from start 1533 to 423 ALT. And AST went from 1400 to 189 since hospital 2 weeks ago. Thank you for giving me hope. Depression has hit me so hard 😢