What is tocilizumab?

Why is tocilizumab prescribed?

What are the possible side-effects?

What are the risks?

What else should I know about tocilizumab?

What is tocilizumab?

Tocilizumab (trade name RoActemra) is a type of drug called a biological therapy. In people with rheumatoid arthritis a protein called IL-6 is overproduced in the body, causing tiredness, anaemia, and inflammation and damage to bones, cartilage and tissue. Tocilizumab blocks the action of IL-6 and reduces these effects.

What type of drug is tocilizumab (trade name RoActemra)?

Tocilizumab is a biological therapy.

What does it do?

It blocks the action of a protein called IL-6 and reduces inflammation.

What is it used for?

It is available for people with rheumatoid arthritis and for children with juvenile idiopathic arthritis (JIA).

How is it taken?

It is administered either by weekly injection under the skin (subcutaneous injection) or by monthly infusion (drip). 

Are there any side-effects?

Side-effects can include a blocked or runny nose, sore throat, headache, dizziness, mouth ulcers, stomach irritation and inflammation around the drip site. It can also make you more likely to develop infections.

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Why is tocilizumab prescribed?

Tocilizumab is available for people with rheumatoid arthritis. It is also very effective for children with juvenile idiopathic arthritis (JIA).

Tocilizumab will only be prescribed if your arthritis is active. It will usually be used if you have already tried at least two disease-modifying anti-rheumatic drugs (DMARDs) such as methotrexate and hydroxychloroquine, and be prescribed in combination with methotrexate. Tocilizumab may be the first biological therapy that you receive, or you may have already tried other biologic therapies such as an anti-TNF drug or rituximab.

Is there any reason I will not be prescribed tocilizumab?

Tocilizumab will not be prescribed if:

  • your rheumatoid arthritis or JIA is not active
  • you are pregnant or breastfeeding
  • you have an infection.Your doctor may decide not to prescribe tocilizumab if:
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  • you have had repeated infections
  • you have a condition such as diabetes that makes you more prone to infection
  • you have had particular infections such as hepatitis B
  • you have had cancer
  • you have liver disease or your liver blood tests are abnormal
  • you have low neutrophils (a type of white blood cell)
  • you have low platelets (which help your blood to clot)
  • you have a history of intestinal ulcers or diverticulitis (inflammation of small pouches protruding through the walls of the intestines).

When and how do I take tocilizumab?

Tocilizumab is only available on prescription from a consultant rheumatologist. It is given once every four weeks by intravenous infusion (a drip into a vein). Each infusion takes about an hour. Tocilizumab can also be given as a weekly injection under the skin (a subcutaneous injection).

How long does tocilizumab take to work?

If you respond to tocilizumab you will probably feel better in 2–12 weeks, most likely within six weeks.

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What are the possible side-effects?

Tocilizumab may cause the following side-effects:

  • a cough or a sore throat
  • a blocked or runny nose
  • a headache or dizziness
  • mouth ulcers
  • conjunctivitis
  • high blood pressure
  • weight gain or swollen ankles
  • skin rashes, infections or itching
  • stomach irritation (gastritis)
  • abdominal pain (diverticulitis)
  • inflammation around the drip site.

Occasionally you may feel unwell during infusions. If this happens you should tell the person giving you the infusion so they can slow it down. If your symptoms are severe you may need to stop treatment, but this is rare.

Taking tocilizumab can sometimes increase your cholesterol level (which can usually be treated by your GP) or affect your liver function tests. It can reduce the number of white cells or platelets in your blood. Occasionally you may need to miss one or more infusions, and rarely stop the drug altogether.

Tocilizumab affects your immune system, so you may be more likely to develop infections. It also reduces the signs of an infection. You should tell your doctor or rheumatology nurse straight away if you have any of the following after starting tocilizumab:

  • a sore throat or mouth ulcers
  • a fever or chills
  • any other symptoms of infection
  • unexplained bruising, bleeding or paleness
  • any new symptoms or anything else that concerns you

You should always read the patient information leaflet included with your medicines package to keep you informed about any possible side effects of your prescribed medications.

What should I look out for?

You should see your doctor immediately if:

  • you develop new symptoms
  • you develop chickenpox or shingles
  • you have not had chickenpox and you come into contact with someone who has chickenpox or shingles.

Chickenpox and shingles can be severe in people on tocilizumab. You may need antiviral treatment, which your doctor will be able to prescribe.

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What are the risks?

People with intestinal ulcers or diverticulitis are at increased risk of bowel perforation and infection. Tell your doctor immediately if you develop stomach pain, particularly if you also have a temperature and there has been a change in your bowel habit, including passing blood.

There may be a slightly increased risk of certain types of cancer in patients using drugs such as tocilizumab which affect the immune system. However, research has not so far confirmed such a link. At present these treatments are not usually given to people who have previously been treated for cancer, but please discuss this with your doctor if you are worried.

How can I reduce the risk of infection?

Because of its effects on the immune system, tocilizumab may make you more likely to pick up infections. You should try to avoid close contact with people with severe active infections, and visit and visit the Food Safety Authority of Ireland website www.fsai.ie for information on reducing your risk of infection from foods.

Will it affect vaccinations?

Tocilizumab is a medication that affects the immune system and may lower the body's ability to fight infection. Immunisation with live or live attenuated vaccines (which contains a very small amounts of the actual germ or weakened germs, such as the flu vaccine or the measles, mumps, rubella (MMR) vaccine), should not be given during treatment with tocilizumab.

If you are in your 70s and are offered shingles vaccination (Zostavax) your doctor may advise having this before starting tocilizumab. Shingles vaccination is not recommended for people who are already on tocilizumab.

Patients should be brought up to date with all vaccinations (immunisations) before starting tocilizumab.

Can I drink alcohol while on tocilizumab?

You can drink alcohol while on tocilizumab but keep within the recommended limits (1–2 units per day for women and 2–3 units per day for men). If you are also taking methotrexate, you should keep well within these limits because methotrexate and alcohol can interact and damage your liver.

Does tocilizumab affect fertility or pregnancy?

If you are thinking of having a baby or if you become pregnant, you should discuss this with your rheumatologist. We do not yet know how tocilizumab might affect an unborn baby. Women of childbearing age must use contraception while having treatment and for three months afterwards. Tocilizumab should not be used during pregnancy unless it is totally necessary. Speak to your doctor if you become pregnant while you are on tocilizumab.

If you are taking methotrexate along with tocilizumab some doctors may advise taking contraceptive precautions for up to six months after stopping treatment.

Does it affect breastfeeding?

We do not know whether tocilizumab can pass into the breast milk and be harmful to your baby. The current advice is to avoid breastfeeding while on tocilizumab.

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What else should I know about tocilizumab?

If you are being prescribed tocilizumab it is recommended that you carry a biological therapy alert card, which you can get from your doctor or rheumatology nurse. Then if you become unwell, anyone treating you will know that you are on tocilizumab and that you are therefore at risk of its side-effects, including infections.

Are there any alternatives?

A number of other drugs are used in the treatment of rheumatoid arthritis and related conditions. Your doctor and rheumatology nurse will discuss these with you.

Will I need any special checks while on tocilizumab?

Before you start treatment you will have a chest x-ray, blood tests and screening to check whether you have ever been exposed to tuberculosis (TB) or hepatitis. Some patients may need treatment for latent (asymptomatic) TB before starting tocilizumab. It is recommended that you have cholesterol checks every 4–8 weeks while you are on tocilizumab, along with tests of your liver, and blood counts. In some units, tests may be repeated before every infusion or at the same time as tests needed for other drugs such as methotrexate.

If you have had a previous hepatitis B infection tocilizumab may increase the risk of it being reactivated. Your doctor may therefore suggest a blood test to check for the presence of hepatitis B.

Can I take other medicines along with tocilizumab?

Tocilizumab may be prescribed alongside other drugs, including methotrexate. You should discuss any new medications with your doctor before starting them, and always tell any other doctor treating you that you use tocilizumab. You should also be aware of the following points:

  • Tocilizumab is not a painkiller. If you are already on a non-steroidal anti-inflammatory drug (NSAID) or painkillers you can carry on taking these, unless your doctor advises otherwise. If tocilizumab is effective, you may not need painkilling drugs so please discuss this with your doctor or rheumatology nurse once you start treatment with tocilizumab.
  • Do not take over-the-counter preparations or herbal remedies without discussing this first with your doctor, rheumatology nurse or pharmacist.

Can I continue with tocilizumab if I am going to have an operation?

If you are going to have an operation please inform your doctor, as you may be advised to stop the tocilizumab temporarily before and after surgery.

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