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Autoimmune hepatitis: Any special diet I should be eating?

Posted by geedle12 @geedle12, Sep 2, 2022

Diagnosed with autoimmune hepatitis 6 months ago. ALT and AST elevated. Was taking 3 mg of budesonide but recent blood test showed increase in enzymes so MD increased to 6 mg a day. I also have osteoporosis and am worried about taking steroids. I am reaching out to anyone who has AIH because I feel I need support. My endocrinologist has me on high calcium diet. Will this hurt my liver? Any special diet I should be eating? Any input appreciated!

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geedle12 | @geedle12 | Sep 4, 2022
In reply to @rosemarya "@geedle12, I do not have any information to share with you. I am a patient and..." + (show)
@rosemarya

@geedle12, I do not have any information to share with you. I am a patient and I rely on my own experience. I commend you for listening to your body and for bringing issues like the herpes simplex to the attention of your doctors.
How often are the labs drawn? My labs were routinely drawn every 3 months, with extra labs as needed. I felt like a pincushion sometimes! You said that you were diagnosed with AIH just 6 months ago, and I suspect that more labs, over time, will show a pattern that will show whether your body is reacting to the steroids for control of AIH.
It is okay to be frustrated because liver disease is a frustrating thing. It can be slow to develop, and difficult to diagnose and to treat. From my experience, the best thing that you can do is to: develop a healthy lifestyle with healthy eating and staying physically active, take the meds and calcium your doctor has prescribed, don't take any over-the counter meds or supplements without doctor's approval, no aspirin, and no alcohol. Trust me, it is easier than it sounds. And most important - keep a list of questions and symptoms to discuss with your doctors.

Keep me posted.

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Thank you i will! Labs are drawn 1x month .

REPLY
debolei | @debolei | Jan 31 4:59am

I was diagnosed with AIH about 7 months ago. Liver biopsy came back as Stage 2. My liver enzymes came back normal even before taking any steroids. From 600 to 20. The PA on my case wants me to skip any steroids and just Azathioprine. Azathioprine scares the crap out of me from reading about it and I am too afraid to take it. Any advice please!

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2 replies
jackie4867 | @jackie4867 | Feb 1 7:57am
In reply to @debolei "I was diagnosed with AIH about 7 months ago. Liver biopsy came back as Stage 2...." + (show)
@debolei

I was diagnosed with AIH about 7 months ago. Liver biopsy came back as Stage 2. My liver enzymes came back normal even before taking any steroids. From 600 to 20. The PA on my case wants me to skip any steroids and just Azathioprine. Azathioprine scares the crap out of me from reading about it and I am too afraid to take it. Any advice please!

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Liver transplant recipient as of 09/18/2023 here- diagnosed with autoimmune hep/PBC overlap 14 yrs ago. Was already stage 3/4 when diagnosed. Took Imuran (azthropine) for years. It had no ill side effect on me but the prednisone made my bones brittle, destroyed my digestive organs (had perforated ulcers from it). If you can avoid the prednisone please do, it wreaks havoc on your body and bones. Your doctor should be your primary source to voice your concerns regarding meds but if you feel your doctor isn’t listening then ask for a second opinion. You know your body better than anyone.
I wish you the best of luck!

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neri47 | @neri47 | Feb 5 8:39am
In reply to @debolei "I was diagnosed with AIH about 7 months ago. Liver biopsy came back as Stage 2...." + (show)
@debolei

I was diagnosed with AIH about 7 months ago. Liver biopsy came back as Stage 2. My liver enzymes came back normal even before taking any steroids. From 600 to 20. The PA on my case wants me to skip any steroids and just Azathioprine. Azathioprine scares the crap out of me from reading about it and I am too afraid to take it. Any advice please!

Jump to this post

I was diagnosed with AIH in 2005.
Went on Prednisone for maybe 6 months then Azathioprine 50 mg X2 since then. Never had an issue with meds. I am now 77 years old.

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