I am 64 and very recently diagnosed with AIH.

Posted , 3 users are following.

I was referred to a liver specialist when my GP noticed some high liver levels following regular blood work. I am scheduled for an ultra sound at the end of the month and a follow-up visit with the specialist in Nov. I have ranged from being panicky, to upset, to worried, to constantly talking myself into staying calm. I have had anxiety problems recently so that is no easy feat. I am very happy to have found this page. I have been reading some of the experiences of others just like me. Keeping my fingers crossed that things will be alright.


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3 Replies

  • Posted

    I feel your pain. I was diagnosed 7 weeks ago. I am 60 years old. Mine enzymes were extremely high. Alp 1533. And AST 1429.  I was feeling sick for like 3 weeks. Stomach pain , Nauseous, etc couldn't really eat.  Then I vomited and went to emergency room.  They did a lot of blood work and that's how they found my liver enzymes off the charts.   

    I went to rheumatologist and they ran a ton of blood work. Said I had lupus. Then I went to Gastro who said he didn't think so. Thank Goodness I didn't listen to the Rheumatologist because he said take this and come back in 3 months. 😩   Plaqunell ...  long story short my Gastroenteroglogy doctor said I am going to put u in hospital and do liver biopsy and start you on prednisone and Aza and my enzymes started coming down overnight. I have done MRI's.  Ctscans. Ultrasounds. 70 viles of blood work and see Gastro every week for weekly blood work and now my enzymes are as of last week Alt is 96. And AST is 85. I went into deep dark depression and anxiety and thought I was going to die.  I just became a grandmother of a 2 year old. I have a lot of support with friends and family when I go into my dark crying spells ..I hate this medications make me feel awful but it saved my life.   I also have bad joint pains and weird feelings 😢  He started me on 30 mg prednisone and 50 mg Aza. Now on 15 to 10mg  and still on 50 mg on Aza.  Probably the rest of my life on low dosage. My liver biopsy is taking forever to really find out damage etc. but I thing it's F2.  I see liver specialists on October 5th.   

    I also changed my whole way of eating. No Gluten. No GMO. All organic. Steam my food. Take Vitamin D  take calcium and probiotics and capsules of Tumeric for inflammation. 

    This has been a very tough 7 weeks. I pray for you I understand exactly what you're going through. Take care of yourself. I also mediate now. Stay away from stress that's a big no no.  It flares you up.  I am more positive then before i was so negative about life and living. Do a lot of research on AIH. Read what's best for you. I am hear to listen. I pray for you and me to get through this.  💕

    • Posted

      Thank you for your kind words and helpful information.  I know very little about my situation, which is contributing to my anxiety about it. And, I live in a small Manitoba town 6 hrs. from the specialist. My one and only visit with the specialist in Aug. was preliminary. He thought perhaps I had PBC. But after more bloodwork, my GP called and said I had AIH and would be probably needing medication and to wait until I heard from the liver specialist. Hopefully, I will learn much more when I see the specialist in Nov. I really don't have any symptoms outside of a belly-ache off and on which may or may not have anything to do with AIH. I'll update as I learn more. Take care.

  • Posted

    Please get in as soon as possible. I don't know how he can say that with not doing a lot of test. Where your liver enzymes real high? Please stay on top of it. At least keep getting blood work for enzymes to see if going up  keep me posted. 💕💕

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