Overview

Autoimmune hepatitis (AIH), is a long-term liver condition, usually lifelong. 

Autoimmune means your body’s immune system (your body’s defence against illness) attacks your body’s own cells. 

Mycophenolate is a medication that helps to treat this condition. It suppresses the body’s immune system to treat inflammation.

Mycophenolate acts slowly, so it might be up to 3 months before its benefits are seen.

The length of treatment depends on each person but it is likely to be for several years and longer in some cases. Many patients need to continue treatment long term to keep their disease under control.

Before you start the medicine

You will need a few blood tests to make sure it's safe for you to start taking the medicine. These may include tests to check:

• your blood count
• liver and kidney function
• hepatitis B 
• hepatitis C
• HIV
• chickenpox
• EBV (Epstein-Barr virus)

We strongly recommend you have the vaccine against strains of pneumonia.

You should also have the flu vaccine every year while taking the medicine.

Your GP practice can arrange these for you.

How to take the medicine

The dose is usually taken twice a day (morning and evening). 

Mycophenolate is usually available as 250mg capsules and 500mg tablets.

You should take each dose with or immediately after food to help reduce stomach upset. The medicine should be swallowed whole with a glass of water. 

Regular blood tests

When you first start mycophenolate, you will need regular blood tests every few weeks.

Monitoring blood tests are essential. If these are not done your prescription may be withheld until you have your blood test.

If your blood tests are stable after 3 months of treatment then you could continue to have them checked every 3 months with your GP. 

When you first start the medicine our specialist doctors and pharmacists will be monitoring you to assess for side effects or abnormalities on your blood tests. You should expect to have regular appointments or receive phone calls from them.

Taking mycophenolate with other medicines

Mycophenolate can interact with other medicines.

Before you start taking mycophenolate, please let your doctor know about all the medicines you take. This should include anything prescribed for you and any medicines you buy from a shop or pharmacy (including herbal and homeopathic).

When you have started treatment, you should always check with your doctor or pharmacist before starting any new medicines. Some medicines can reduce the amount of mycophenolate absorbed by your body, or lower the levels in your blood, for examples some medicines for indigestion, and some antibiotics and antifungals. 

Other medications such as antivirals (like aciclovir and ganciclovir), or medicines that suppress your body’s immune system (immunosuppressants) or medicines that can reduce your white blood cell count (such as clozapine) can also interact with mycophenolate. 

You should ideally to avoid ‘live’ vaccines when taking mycophenolate and for at least 3 months after stopping it. If you are considering vaccinations check with your doctor or pharmacist first.

If you forget to take mycophenolate

If you remember within 6 hours of your dose being due, take your dose as normal. If it's more than 6 hours, then take the next dose as planned.

Do not double your dose if you have forgotten.

Try not to forget any doses. Mycophenolate works slowly and therefore if you regularly forget the medication this will result in you having a lower level in your blood, potentially making it less effective.

Drinking alcohol while taking mycophenolate

We recommend you keep well within the national recommended limits of alcohol (maximum of 14 units per week).

14 units is about the same as 6 pints of average-strength beer or 10 small glasses of lower-strength wine.

Any amount of alcohol can damage the liver, especially if you have an underlying condition such as autoimmune hepatitis. Depending on the state of your liver, your clinician may ask you to avoid alcohol completely.

Mycophenolate in pregnancy and breastfeeding

You should not take mycophenolate if you are pregnant. If you are of childbearing age, you should only start treatment after a negative pregnancy test, and it is recommend that you take 2 tests 8-10 days apart before treatment. 

Pregnancy tests might be repeated during treatment (for example, if contraception is forgotten). You must use reliable contraception before treatment and for 6 weeks after stopping. Using 2 forms of contraception is best to minimise the risk of unintended pregnancy.

If you become pregnant or are planning on pregnancy while taking mycophenolate, please contact your doctor as soon as possible.

If you are planning on fathering a child speak to our team before taking mycophenolate. They will discuss any risks to the baby and any risks to your health by changing to another medication. You should use condoms while taking mycophenolate, and for at least 90 days after stopping treatment. Female partners of men taking mycophenolate are also advised to use effective contraception for this time period.

Do not breast feed while on mycophenolate.

Side effects of mycophenolate

Mycophenolate works by reducing the immune system. This means you might be more likely to get an infection.

Contact your GP if you start to feel unwell and think you might have caught an infection. 

Everyone responds differently to the medication, but possible side effects include: 

• feeling sick(nausea) and being sick (vomiting), decreased appetite and indigestion
• diarrhoea, constipation, bloating
• headache, dizziness, pins and needles
• changes in blood pressure (high or low) and heart rate
• changes in blood sugar and blood lipid (fat) levels
• hair loss 
• rashes, acne
• joint or muscle pain
• changes in frequency of peeing (passing urine)
• burning when peeing (usually more common in the first year)

More serious side effects

More serious side effects will require closer monitoring and in some cases we may decide to stop the medicine.

Signs of the following side effects will be monitored on your regular blood tests.

• The medicine can suppress your bone marrow which reduces the number of red cells, white cells and platelets produced. 
• Abnormal liver function tests. 
• Abnormal kidney function tests. 

There is an increased risk of developing stomach ulcers for patients taking this medicine.

Mycophenolate increases the skin’s sensitivity to the sun and so increases the risk of certain types of skin cancer. Wear protective clothing and use a high sun protection factor (SPF 50) sun cream.

Lymphoma is a type of cancer affecting the lymph glands. The risk of getting this is higher than the general population but it remains very rare.

Getting a repeat prescription

After your hospital specialist has started you on mycophenolate, they'll advise your GP what dose to prescribe.

Your first prescriptions will be given to you by the hospital until your GP has agreed to prescribe them to you. If your GP does not agree to prescribe your mycophenolate, your prescriptions will continue to be supplied from our hospital

If any changes to the dose are needed then the hospital will tell your GP.

Useful information

For more information about autoimmune hepatitis, please visit the British Liver Trust, or call the helpline number on 0800 652 7330