What is mycophenolate?

Mycophenolate is a disease-modifying anti-rheumatic drug (DMARD). Its full name is mycophenolate mofetil.

DMARDs dampen down the underlying disease process, rather than simply treat the symptoms. They reduce the activity of the body's defence system (immune system), which may be overactive in some inflammatory conditions.

Uses

Mycophenolate is used mainly to treat several different types of rheumatic conditions, including:

  • lupus and other rare connective tissue disorders including scleroderma
  • diseases in which there’s inflammation of blood vessels, for example vasculitis.

Mycophenolate may also be used after organ transplantation, for example in kidney transplants. This is to help stop the body rejecting the new organ.

How is it taken and how long does it take to work?

Mycophenolate is usually taken as a capsule or tablet depending on the dose required, and is usually taken twice a day with food or water. They should be swallowed whole and not crushed or chewed.

Your doctor will advise you about the correct dose. Higher doses are usually taken as tablets rather than capsules.

Unless you have severe side-effects it's important to keep taking mycophenolate:

  • even if it doesn't seem to be working at first
  • even when your symptoms improve (as it will help to keep the disease under control).

Mycophenolate doesn't work immediately. It may be up to three months before you notice any benefit.

Side-effects and risks

The most common side-effects of mycophenolate are nausea (feeling sick), diarrhoea, vomiting or stomach pain.

Mycophenolate can also affect your blood count (one of the effects is that fewer blood cells are made) and can make you more likely to develop infections.

You should tell your doctor or rheumatology nurse specialist straight away if you develop any of the following after starting mycophenolate:

  • a sore throat
  • a fever
  • any other symptoms of infection
  • unexplained bruising or bleeding
  • any other new symptoms or
  • anything else that concerns you.

If any of the symptoms listed above are severe, you should stop taking mycophenolate and see your doctor immediately. Generally, however, it's best to talk to your doctor before stopping or reducing mycophenolate.

You should also see your doctor if you develop chickenpox or shingles or come into contact with someone who has chickenpox or shingles. These infections can be severe if you're on mycophenolate.

You may need antiviral treatment, and your mycophenolate may be stopped until you're better.

Although this is uncommon, there's a slightly increased risk of certain types of cancer in people using mycophenolate. Please discuss this matter with your doctor if you're worried. Because of the small increase in risk of skin cancer, you should avoid exposure to strong sunlight and protect your skin with sunblock or sunscreen.

Because mycophenolate can affect the blood count, and can sometimes cause liver or kidney problems, your doctor will arrange for you to have a blood test before you start treatment and regular blood checks while on mycophenolate. You may be asked to keep a record booklet with your blood test results, and you should bring this with you when you visit your GP or the hospital.

You must not take mycophenolate unless you're having regular checks.

Reducing the risk of infection

Effects on other treatments

Mycophenolate may be prescribed along with other drugs to treat your condition. However, some drugs can interact with mycophenolate, so you should discuss any new medications with your doctor before starting them, and you should always tell any other doctor treating you that you're taking mycophenolate.

You should also be aware of the following points:

  • You can carry on taking non-steroidal anti-inflammatory drugs (NSAIDs) or painkillers, if needed, unless your doctor advises otherwise.
  • Don't take over-the-counter preparations or herbal remedies without discussing this first with your doctor, rheumatology nurse specialist or pharmacist.

Vaccinations

If you're on mycophenolate it’s recommended that you avoid live vaccines such as yellow fever or shingles. However, in certain situations a live vaccine may be necessary (for example rubella immunisation in women of childbearing age), in which case your doctor will discuss the possible risks and benefits of the immunisation with you.

Pneumococcal vaccine (which gives protection against the most common cause of pneumonia) and yearly flu vaccines are safe and recommended.

Alcohol

You should only drink alcohol in small amounts because alcohol and mycophenolate can both affect your liver.

It's important not to drink more alcohol than the government recommended safe limits – these state that adults shouldn't drink more than 14 units per week.

It's strongly recommended to have alcohol free days, without 'saving up' units to drink in one go.

Advice can vary and some rheumatologists may suggest stricter limits. If you're concerned you should talk to your rheumatology team.

Fertility, pregnancy and breastfeeding

You shouldn't take mycophenolate when pregnant, and you shouldn't become pregnant for at least six weeks after stopping it.

If there's a possibility you may be pregnant you should have a pregnancy test before starting mycophenolate.

If you're planning a family or if you become pregnant while taking mycophenolate, you should discuss this with your doctor as soon as possible.

You shouldn't breastfeed if you're on mycophenolate. The drug may pass into the breast milk and could be harmful to your baby.