What Not to Do with Autoimmune Hepatitis: Key Patient Tips
Living with autoimmune hepatitis (AIH), often called a rare disease, can feel overwhelming at times, but understanding what not to do can make managing the condition easier. These tips are based on the Autoimmune Hepatitis Association’s most important ideas about good care, strong communication, and staying involved in your health.
Below are our Top Five “What Not to Do” Principles to help you stay healthy, prepared, and confident in your care.
1. Don’t Go to Your Doctor’s Appointment Without Being Prepared
Showing up to a visit with no notes or questions can make it harder for your doctor to help you.
Why this matters: AIH needs careful follow-up. Doctors make better decisions when they know information. It is helpful to share how you have been feeling, what medicines you are taking, and what questions you have. Regular monitoring — including labs and symptoms — is a core part of high-quality AIH care. AASLD Practice Guidance for Autoimmune Hepatitis (Hepatology, 2019)
What to do instead:
- Write down your symptoms. https://aihep.org/tips-for-doctors-visits/
- Bring your medication list.
- Keep track of your lab results if you have them.
- Come with questions so you and your doctor can use the time well. https://aihep.org/questions-for-your-doctor/
2. Don’t Ignore Your Mental Health
Many people with AIH feel stress, worry, sadness, or tiredness. These feelings can affect your body and how well you manage your disease.
Why this matters: Mental and physical health are closely connected. People living with chronic liver disease frequently experience depression, anxiety, and reduced quality of life. These symptoms can affect self-management behaviors. American Psychological Association – Chronic Illness & Mental Health
What to do instead:
- Talk to your doctor about how you are feeling emotionally.
- Consider counseling, support groups, or sharing with someone you trust. https://aihep.org/support-groups/
- Taking care of your mind helps take care of your liver too. https://aihep.org/mental-health/
3. Don’t Skip Your Medications or Change Them on Your Own
Missing doses or stopping medicines without talking to your doctor can cause inflammation to return, even if you feel okay.
Why this matters: AIH inflammation can be active even when you do not feel symptoms. Studies show that skipping or stopping treatment increases the risk of flare-ups and liver damage. AASLD AIH Practice Guidance 2019
What to do instead:
- Take your medications as prescribed.
- If you have side effects or concerns, talk to your doctor first. They can help adjust your plan safely.
- Need help with medication adherence? Click here for tips.
4. Don’t Be a Passive Patient — Get Involved in Your Care
Letting the doctor make all the decisions without your input can leave you confused or unsure about your health.
Why this matters: Patients who take part in their care usually do better. Shared decision-making improves understanding, adherence, and long-term outcomes. Institute for Healthcare Improvement – Patient Engagement
What to do instead:
- Ask questions.
- Learn the basics of AIH.
- Know what your medicines do and why you need them.
- Working with your doctor as a team leads to better care.
5. Don’t Ignore How Food Makes You Feel
Food may not cure AIH or change inflammation, but it can affect your energy, digestion, and comfort.
Why this matters: While no specific AIH diet exists, liver-healthy eating is connected to better comfort, overall well-being, and metabolic health in chronic liver disease. EASL Clinical Practice Guidelines on Nutrition in Chronic Liver Disease (2019) Mayo Clinic – Nutrition for Chronic Liver Disease
What to do instead:
- Notice which foods help or bother you.
- Try keeping a simple food and symptom log.
- If you want guidance, ask for a dietitian who understands liver disease. https://aihep.org/diet/
- Learn to listen to your body. It is an important skill.
Autoimmune hepatitis is easier to manage when you stay prepared, take care of your mental health, follow your treatment plan, and work closely with your doctor. Paying attention to how you feel — both physically and emotionally — can help you live well with the disease.
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