Autoimmune hepatitis care (Autoimmune hepatitis (AIH) management)
Long-term care for a liver inflamed by an overactive immune system, using medicines to calm the immune response, protect the liver and keep the disease in remission.
✓ Medically reviewed by a GMC-registered consultant · last reviewed September 2026 · next review September 2027 · how we review
In short
- Autoimmune hepatitis is treated by calming the immune system; there is no cure, but it is usually well controlled.
- Treatment usually starts with steroids and adds a longer-term immune-suppressing medicine so the steroid can be reduced.
- Medicines are usually needed for at least two years and often for life, with regular blood-test monitoring.
- Stopping treatment can cause a relapse, so any change should be made by your specialist.
A plain-English summary. The detail — including risks and recovery — is below.
At a glance
A general guide. Your specialist will give you advice for your situation.
Medicines can bring liver inflammation under control, often within weeks to months.
Budesonide is generally not suitable once cirrhosis has developed, where standard steroids are preferred.
Steroids usually start to calm the inflammation and liver blood tests often begin to improve. Frequent blood tests check progress and safety.
A clear blood-test monitoring schedule, frequent at first and continuing long-term.
Steroids usually start to calm the inflammation and liver blood tests often begin to improve. Frequent blood tests...
The added medicine (such as azathioprine) reaches full effect, allowing the steroid to be reduced. Many people...
Liver tests settle to normal or near-normal. The aim is to maintain this on the lowest effective dose.
Monitoring continues, less often once stable. Any attempt to reduce or stop treatment is supervised, with watch...
What is autoimmune hepatitis care?
Autoimmune hepatitis (AIH) is a condition where the immune system mistakenly attacks the liver, causing inflammation. Left untreated, this can lead to scarring (cirrhosis) and liver failure, so most people need treatment.
There is no cure, but AIH is usually very treatable. Care means damping down the immune attack with medicines, watching the liver with regular blood tests, and adjusting treatment to keep the disease in remission (quiet) with as low a medicine dose as possible.
Treatment usually begins with a steroid (such as prednisolone or budesonide) to bring inflammation under control quickly. A second medicine, often azathioprine or mycophenolate, is then added so the steroid can be reduced. Most people stay on a low-dose maintenance medicine for years, and many for life.
This guide explains what good long-term care looks like and what to ask. It is general information, not personal medical advice; your liver specialist (hepatologist) will tailor your plan.
Types, options & approaches
There may be different ways to do this. The right approach depends on the clinical question and your circumstances.
Steroids vs longer-term immunosuppressants
| Feature | Steroids | Azathioprine / others |
|---|---|---|
| Main role | Quick control of inflammation | Long-term maintenance |
| Speed | Works fast | Slow (up to ~3 months) |
| Long-term use | Reduced as soon as possible | Often continued for years |
| Key side effects | Weight gain, bones, mood, sleep | Infection risk, blood counts, nausea |
Most people use these together at first, then settle on the lowest effective maintenance treatment.
Preparing for your treatment
- Bring details of any other autoimmune conditions and a full list of your medicines and supplements.
- Ask about a blood test (TPMT) before starting azathioprine, which helps judge the safe dose.
- Tell your clinician if you are pregnant, might become pregnant, or are breastfeeding, as this affects medicine choice.
- Ask how your bones will be protected if you need longer-term steroids.
- Make sure you are up to date with recommended vaccinations before strong immune suppression.
- Plan for regular blood tests, especially in the first months.
- Keep alcohol low to avoid adding to liver strain.
What happens
AIH is usually diagnosed by a liver specialist using blood tests (including antibodies and immune proteins), and often a liver biopsy to confirm the diagnosis and judge how much inflammation and scarring there is.
Treatment then usually starts with a higher dose of steroid to bring the inflammation down quickly, with the dose reduced step by step as liver blood tests improve. A longer-term medicine, commonly azathioprine, is added so the steroid can be lowered or, for some people, stopped.
You have frequent blood tests at first to check the liver is settling and that the medicines are not causing problems with your blood counts or other organs. Once stable, monitoring becomes less frequent but continues long-term. If you have cirrhosis, you may also need surveillance for complications.
Is this treatment right for me?
A good consultation should explore whether it's the right choice for you now — including reasons to wait or consider something else.
May not be suitable if…
- Budesonide is generally not suitable once cirrhosis has developed, where standard steroids are preferred.
- Azathioprine may be unsuitable or need dose adjustment if a TPMT test shows low enzyme activity.
- Stopping or skipping treatment because you feel well is unsafe and risks relapse.
- Immune-suppressing treatment may need adjusting if you have a serious active infection.
Delay or rearrange if…
- You have a serious active infection that needs treating before increasing immune suppression.
- You are pregnant or planning pregnancy, so the safest medicine plan can be chosen.
- Important tests (such as TPMT before azathioprine, or vaccinations) have not yet been arranged.
- You are acutely unwell with severe liver inflammation needing urgent inpatient care rather than routine clinic management.
Alternatives to discuss
- Different immunosuppressants (mycophenolate, mercaptopurine, tacrolimus) if azathioprine is not tolerated.
- NHS specialist care as an alternative to private pathways.
- Careful, supervised reduction of treatment in well-established remission for selected people.
- Liver transplant assessment if the disease cannot be controlled and the liver fails.
Before you decide
Use this as a shared-decision checklist. The aim is not just “can this be done?”, but whether it is right for you, now, with the risks and alternatives clearly understood.
What matters most to me?
Think about symptoms, daily life, work, caring responsibilities, sport, fertility, travel, appearance and anxiety — the right choice depends on your priorities, not just the medical facts.
What are all my options?
Ask about waiting, monitoring, medicines, rehabilitation, a smaller or larger procedure, a different test, NHS referral, or a second opinion where that would help.
What would make me pause?
Active infection, pregnancy, unstable medical problems, smoking, medicines that increase bleeding, poor support at home, or feeling pressured are all reasons to slow down and get tailored advice.
What happens if I do nothing today?
For some problems, waiting is safe; for others, delay can make treatment harder. A good consultation should explain the trade-off in plain English.
Benefits
- Medicines can bring liver inflammation under control, often within weeks to months.
- Good control can prevent or slow scarring and protect long-term liver health.
- Many people reach remission and feel well on a low maintenance dose.
- Adjusting treatment can keep the disease quiet while limiting side effects.
- Effective treatment greatly reduces the chance of needing a liver transplant.
Risks & complications
- Steroid side effects such as weight gain, a rounder face, disturbed sleep and indigestion
- Tiredness, nausea or increased risk of infections from immune-suppressing medicines
- Needing regular blood tests, frequently at first
- Needing long-term, sometimes lifelong, treatment
- Thinning of the bones (osteoporosis) with longer steroid use
- Low blood counts on azathioprine or related medicines, which is monitored
- Disease relapse if treatment is reduced or stopped too soon
- Diabetes or raised blood pressure linked to steroids
- Serious infection while immune-suppressed
- Liver inflammation that does not respond to first-line treatment
- Progression to cirrhosis and, rarely, end-stage liver disease needing transplant
- A small long-term increase in certain cancers with prolonged immune suppression
The two biggest issues are the side effects of long-term immune-suppressing medicines and the risk of relapse if treatment is reduced too quickly. Ask how your bloods and bones will be monitored, what the plan is if azathioprine is not tolerated, and how any attempt to lower or stop treatment would be supervised.
Published figures to discuss
How well AIH responds, and the risk of relapse, varies with how active the disease is at diagnosis, whether there is already cirrhosis, and how treatment is managed. Robust single percentages are hard to apply to individuals, so this guide describes risks in qualitative terms and leaves precise rates to your specialist.
| Figure | Reported range | How to interpret it | Source / confidence |
|---|---|---|---|
| Autoimmune hepatitis prevalence | Rare; European estimates are often around 16 to 18 per 100,000 people | Rare conditions are easy to miss, so diagnosis uses blood tests, exclusion of other causes and often liver biopsy. | Efficacy of combination therapies for autoimmune hepatitis - review (PMC)ncbi.nlm.nih.govPublished figure |
| Progression if untreated | High risk of cirrhosis, liver failure and death in active untreated disease | The reason for immunosuppression is to prevent long-term liver damage, not just improve blood tests. | Efficacy of combination therapies for autoimmune hepatitis - review (PMC)ncbi.nlm.nih.govSource-linked context |
| Biochemical remission on steroids plus azathioprine or similar treatment | Achievable in most patients, often quoted around 80% or more with appropriate therapy | Remission means controlled disease, not cure; maintenance treatment and monitoring usually continue for years. | Efficacy of combination therapies for autoimmune hepatitis - review (PMC)ncbi.nlm.nih.govPublished figure |
| Relapse after stopping treatment | Common, often more than half in published series | Treatment withdrawal should be specialist-led and usually considered only after sustained remission. | Guide sourcesClinical context |
These are literature figures, not a personalised prediction. Your own risks and likely benefits depend on your circumstances, your health, and how your care is carried out and followed up.
What happens afterwards
There is no single recovery point, because this is long-term care. "Afterwards" means how the liver settles on treatment, and the ongoing monitoring needed to keep it that way.
- Liver blood tests improving over the first weeks to months
- Some steroid side effects early on that ease as the dose is reduced
- Feeling more energetic as inflammation settles
- Needing ongoing medicines and monitoring rather than a one-off cure
Aftercare
- Take your medicines exactly as prescribed and do not stop them without specialist advice.
- Attend all blood-test appointments, which are frequent at first.
- Report signs of infection promptly, as your immune system is suppressed.
- Follow advice on bone protection if you are on longer-term steroids.
- Keep up recommended vaccinations (avoiding certain 'live' vaccines while immune-suppressed - check first).
- Keep alcohol low and look after general liver health.
- Tell other clinicians you have AIH and are on immune-suppressing treatment.
- TPMT blood test arranged before azathioprine, if advised
- Blood-test monitoring schedule written down
- Bone protection discussed for longer-term steroids
- Vaccinations checked and updated before/around treatment
- List of infection warning signs and who to contact
- Plan agreed for how treatment might later be reduced
⚠ Get urgent help if…
- Yellowing of the skin or eyes (jaundice) that is new or worsening
- Fever, sore throat or feeling very unwell (possible infection while immune-suppressed)
- Easy bruising or bleeding (possible low blood counts)
- Severe tummy pain, dark urine or pale stools
- New confusion, drowsiness or marked swelling of the tummy or legs
- Vomiting blood or passing black, tarry stools - call 999
Who to contact: your clinician, clinic or test provider first (keep their number to hand). For urgent advice when you can't reach them, call NHS 111. In an emergency, call 999.
General guidance — it doesn't replace the specific advice your specialist gives you.
Results & realistic expectations
A good result is remission: liver blood tests that settle to normal or near-normal, with the disease quiet on the lowest effective treatment. For many people this means feeling well and protecting the liver from further damage.
What treatment cannot do is cure the underlying tendency, so relapse is possible, especially if medicines are reduced too soon. Some people will have already developed cirrhosis by diagnosis, and a small number do not respond fully and need more intensive treatment or transplant assessment.
With well-controlled AIH, many people have a normal or near-normal life expectancy. The benefit lasts as long as the disease stays in remission, which is why treatment is often long-term or lifelong and monitoring continues. Some people can eventually try reducing or stopping treatment under supervision, but relapse is common, so this is done carefully.
Related tests, treatments or support
AIH care is often coordinated with management of other autoimmune conditions, which can occur together. If there are overlapping features with primary biliary cholangitis or primary sclerosing cholangitis, treatment is tailored to the combined picture. Bone health and vaccination are managed alongside the immune-suppressing treatment.
Follow-up & long-term care
Follow-up is long-term. Blood tests are frequent when starting or changing treatment, then spaced out once the disease is stable, but continue indefinitely. People with cirrhosis may also need surveillance for complications, including liver cancer. Any plan to reduce or stop medicines is supervised with close monitoring for relapse.
- Long-term immune-suppressing medicine, often for years or life
- Regular liver and blood-count monitoring
- Bone protection and monitoring with longer-term steroids
- Up-to-date vaccinations, with care around live vaccines
- Surveillance for complications if cirrhosis is present
- Supervised, cautious reduction of treatment only if remission is well established
Repeat, follow-on and what comes next
- Treatment is adjusted over time to keep remission on the lowest effective dose.
- If one medicine is not tolerated or does not work, another is usually tried.
- Relapse after reducing or stopping treatment is common, so reassessment and restarting may be needed.
Ask what happens if the result is unclear or needs repeating, and what is included if further tests or follow-up are needed.
What good aftercare looks like
- A clear blood-test monitoring schedule, frequent at first and continuing long-term.
- A named contact and written advice on infection and relapse warning signs.
- Bone protection and vaccination managed alongside immune suppression.
- Coordination with other specialists if you have additional autoimmune conditions.
- A supervised, gradual approach to any reduction of treatment.
What affects the cost
Costs vary a great deal between people and providers, and we don't publish prices. What matters is understanding what drives the cost and making sure your quote is complete. The main things that affect it:
- Specialist consultations and the frequency of follow-up
- Diagnostic tests, including blood tests and often a liver biopsy
- Regular blood-test monitoring, especially when starting or changing treatment
- The medicines used and any tests before starting (such as TPMT)
- Bone-protection measures and monitoring with longer-term steroids
- Surveillance for complications if cirrhosis is present
- The specialist's consultation and follow-up fees
- Costs of diagnostic tests, including any liver biopsy
- How often monitoring blood tests are needed and their cost
- The cost of medicines and who provides repeat prescriptions
- Whether bone protection and vaccinations are included
- What happens, and who pays, if you relapse or develop a complication
On the NHS? Autoimmune hepatitis is routinely managed on the NHS, including transplant assessment where needed; private care is mainly used for speed, choice of clinician or a second opinion.
You're entitled to your total cost in writing — including reports, follow-up and what happens if the result is inconclusive — before you decide.
Consent traps and marketing red flags
These are not small details. They are often where patients lose choice, time to reflect, or realistic expectations.
Consent traps
- Not being told that AIH has no cure and usually needs long-term treatment.
- Stopping steroids or maintenance medicines without a clear, supervised plan.
- No discussion of long-term steroid effects on bones, weight and mood.
- No TPMT testing or blood-count monitoring around azathioprine.
- No plan for pregnancy when relevant.
Marketing red flags
- Claims that a diet, supplement or 'immune reset' can cure autoimmune hepatitis.
- Encouraging people to stop prescribed immune-suppressing medicines.
- Offering treatment without proper blood-test monitoring.
- Promising rapid, permanent cure of a long-term autoimmune condition.
Choosing a specialist safely
- Check the specialist is on the GMC Specialist Register for this area.
- Make sure they work at a CQC-registered service, and look for membership of the relevant Royal College or professional body.
- You're entitled to time to consider and to have your questions answered before you agree — the specialist who looks after you should explain it, not a salesperson.
- Be wary of pressure: time-limited offers or deposits taken before you've had time to think are red flags, not bargains.
- You're entitled to your total cost in writing — including any follow-up — before you decide.
Questions to ask your medical professional
Take this to your consultation. A good specialist will welcome every one of these.
- How severe is my liver inflammation, and is there any scarring (cirrhosis) already?
- What is my treatment plan, and how will the steroid be reduced over time?
- Should I have a TPMT test before azathioprine, and what if I cannot tolerate it?
- How often will I need blood tests, and how will my bones be protected?
- What are the signs of a relapse or an infection I should report?
- If I want to try reducing treatment one day, how would that be done safely?
- Are you on the GMC Specialist Register for this area, and which Royal College or professional body are you a member of?
- Will you be the specialist who carries out my treatment, and who looks after me afterwards?
- What are the risks for someone like me, and how often do your own patients have a problem or need it repeated or redone?
- What does a realistic result look like — and what can this treatment not achieve?
- What are my options, including waiting, doing nothing for now, or choosing a different approach?
- Can I have written information, results and aftercare instructions in a format I can use, including any accessibility or communication support I need?
- What is the total cost in writing, including any follow-ups, and how much time do I have to decide?
Frequently asked questions
Is autoimmune hepatitis curable?
Why do I need steroids and a second medicine?
How long will I be on treatment?
What are the main side effects to watch for?
Can I get pregnant on these medicines?
Is this treated on the NHS?
Find a verified specialist for autoimmune hepatitis care
Every consultant is GMC-checked and independently reviewed. Search by postcode and distance, or switch to a map. Ordered by rating, relevance and recency — never by who pays.
No verified consultants list this procedure yet — browse the full directory.
How we made this page
Medically reviewed by a GMC-registered consultant. Written in plain English, checked against NHS, NICE, GMC and relevant Royal College / specialist-society guidance, and kept under review. No clinic paid to appear on this page, and we publish no pricing. This is general information to help you prepare — it is not a substitute for advice from your own clinician. How we review our guides →
Source hierarchy: UK regulator and NHS/NICE guidance first, then relevant Royal College or specialist-society guidance, then peer-reviewed evidence for procedure-specific figures where available.
Sources & standards: British Liver Trust - Autoimmune hepatitis: treatment Guy's and St Thomas' NHS - Steroids for autoimmune hepatitis Guy's and St Thomas' NHS - Azathioprine for autoimmune hepatitis Cambridge University Hospitals NHS - Autoimmune hepatitis (AIH) Efficacy of combination therapies for autoimmune hepatitis - review (PMC)
Reviews reflect patients' experience of care, not clinical outcomes. For procedure volumes and outcome data see PHIN.
Last medically reviewed 2026-09-21. Spotted something wrong or out of date? Report an error in this guide.
Related guides: Primary biliary cholangitis (PBC) care · Primary sclerosing cholangitis (PSC) care · Alcohol-related liver disease care · Cirrhosis management and monitoring · Haemochromatosis (iron overload) management