Tocilizumab Tocilizumab

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1 Drug information Tocilizumab Tocilizumab This leaflet provides information on tocilizumab and will answer any questions you have about the treatment. Arthritis Research UK produce and print our booklets entirely from charitable donations.

2 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.

3 At a glance What type of drug is tocilizumab (trade name RoActemra)? Tocilizumab is a biological therapy. What does it do? It blocks the action of IL-6 and reduces inflammation. What is it used for? It s available for people with rheumatoid arthritis. How is it taken? Infusions are given once every four weeks. 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.

4 Why is tocilizumab prescribed? Tocilizumab is available for people with rheumatoid arthritis. It s also very effective for children with juvenile idiopathic arthritis (JIA). Tocilizumab will only be prescribed if your arthritis is active. It ll only be used if you ve already tried at least two disease-modifying anti-rheumatic drugs (DMARDs) such as methotrexate and hydroxychloroquine, and usually it would be prescribed in combination with methotrexate. Tocilizumab may be the first biological therapy that you receive, or you may have tried other biologic therapies such as an anti-tnf drug or rituximab. Is there any reason I won t be prescribed tocilizumab? Tocilizumab won t be prescribed if: your rheumatoid arthritis or JIA isn t active you ve not tried other diseasemodifying treatments first you re pregnant or breastfeeding you have an infection. Your doctor may decide not to prescribe tocilizumab if: you ve had repeated infections you have a condition that such as diabetes that makes you more prone to infection you ve had particular infections such as hepatitis B you ve had cancer you have liver disease or your liver function 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 s given once every four weeks by intravenous infusion (a drip into a vein). Each treatment takes about an hour. In the future tocilizumab may also be available as a subcutaneous injection (an injection under the skin). How long does tocilizumab take to work? If you respond to tocilizumab you ll probably feel better in 2 12 weeks, most likely within six weeks. Use the space below to record the details of your next infusion: Date Location Ward/clinic name

5 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 affect your cholesterol level, which can usually be treated by your GP, or 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. What should I look out for? You should see your doctor immediately if: you develop new symptoms you develop chickenpox or shingles you ve 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. The long-term side-effects of tocilizumab aren t yet fully understood because it s a relatively new drug. What are the risks? People with intestinal ulcers or diverticulitis are at increased risk of bowel infection. Tell your doctor immediately if you develop stomach pain, particularly if you also have a temperature and there s 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 hasn t so far confirmed such a link. At present these treatments aren t usually given to people who ve previously been treated for cancer, but please discuss this with your doctor if you re worried.

6 Tocilizumab blocks the action of IL-6 and reduces inflammation. 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 avoid close contact with people with severe active infections, and visit the Food Standards Agency website gov.uk/safereating for information on reducing your risk of infection from foods. Will it affect vaccinations? If you re taking tocilizumab it s recommended that you avoid live vaccines such as yellow fever. 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 vaccination with you. If you re in your 70s and are offered shingles vaccination (Zostavax) your doctor may advise having this before starting tocilizumab. Shingles vaccination isn t recommended for people who are already on tocilizumab. Pneumovax (which gives protection against the most common cause of pneumonia) and yearly flu vaccines don t interact with tocilizumab it s important that you have these. Can I drink alcohol while on tocilizumab? You can drink alcohol while on tocilizumab but keep within the recommended limits limits (2 3 units per day for women and 3 4 units per day for men). If you re 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? We don t 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 shouldn t be used during pregnancy unless it s totally necessary. Speak to your doctor if you become pregnant while taking tocilizumab. If you re taking methotrexate along with tocilizumab some doctors may advise taking contraceptive precautions for up to six months after stopping treatment. And because methotrexate can also affect sperm this advice applies to both men and women who are taking methotrexate. Does it affect breastfeeding? We don t 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.

7 What else should I know about tocilizumab? If you re being prescribed tocilizumab it s 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 re on tocilizumab and that you re 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 ll have a chest x-ray, blood tests and a screening to check whether you ve ever been exposed to tuberculosis (TB) or hepatitis. Some patients may need treatment for latent (asymptomatic) TB before starting tocilizumab. It s 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 ve 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 isn t a painkiller. If you re 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. Don t 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 m going to have an operation? If you re going to have an operation please inform your doctor, as you may be advised to stop the tocilizumab temporarily before and after surgery. Notes

8 Where can I get more information? Arthritis Research UK is the charity leading the fight against arthritis. We do this by funding high-quality research, providing information and campaigning. We publish over 60 information booklets which help people to understand more about their condition, its treatment, therapies and how to help themselves. If you would like any further information about tocilizumab, or if you have any concerns about your treatment, you should discuss this with your doctor, rheumatology nurse or pharmacist. Get involved! You can help to take the pain away from millions of people in the UK. To get more actively involved, please call us on or us at enquiries@arthritisresearchuk.org or go to A team of people contributed to this booklet. It was written by professor of clinical rheumatology Prof. John Isaacs, who has expertise in the subject. It was assessed at draft stage by rheumatology specialist registrar Dr James Bateman, clinical nurse specialist Sharon Petford, and consultant rheumatology nurse Diane Home. An Arthritis Research UK editor revised the text to make it easy to read, and a non-medical panel, including interested societies, checked it for understanding. An Arthritis Research UK medical advisor, Dr Ben Thompson, is responsible for the content overall. Please note: We have made every effort to ensure that this content is correct at time of publication, but remember that information about drugs may change. This information sheet is for general education only and does not list all the uses and side-effects associated with this drug. For full details please see the drug information leaflet that comes with your medicine. Your doctor will assess your medical circumstances and draw your attention to any information or side-effects that may be relevant in your particular case. Arthritis Research UK Copeman House, St Mary s Court, St Mary s Gate, Chesterfield, Derbyshire S41 7TD Tel calls charged at standard rate Registered Charity England and Wales No , Scotland No SC Arthritis Research UK 2013 Published October /D-TOCIL/13-1 This leaflet has been produced, funded and independently verified by Arthritis Research UK.