Tocilizumab (RoActemra)

What is tocilizumab?

Tocilizumab (RoActemra™) is a type of drug called a biological therapy. In some conditions too much of a protein called IL-6 is produced in the body, leading to tiredness, anaemia, inflammation and damage to bones, cartilage and other tissues. Tocilizumab blocks the action of IL-6, reducing these effects.

Tocilizumab isn't a painkiller, but can modify the disease over a longer period. It may be 2–12 weeks before you notice an improvement.

Tocilizumab can be prescribed by a rheumatologist for rheumatoid arthritis or juvenile idiopathic arthritis (JIA).

It may be the first biological therapy you receive, or you may have tried others first, such as an anti-TNF drug or rituximab. It's usually prescribed in combination with methotrexate.

Are there any reasons I won't be prescribed tocilizumab?

Tocilizumab won't be started if:

Doctors sometimes use a score known as DAS28 to work out how active your arthritis is. This counts how many of 28 specific joints are tender and swollen, and looks at inflammation levels in a blood test. You'll also be asked to score how well you feel on a scale of 0 to 10.

Your doctor may decide not to prescribe you tocilizumab if you're pregnant or breastfeeding, or if you have (or have had):

  • a condition such as diabetes that makes you more prone to infection
  • liver disease or abnormal liver function tests
  • low levels of neutrophils (white blood cells) or platelets (which help the blood to clot)
  • a history of intestinal ulcers or diverticulitis
  • repeated or serious infections
  • cancer.

Before you start treatment you'll have a chest x-ray and blood tests. Your doctor will check if you’ve ever been exposed to tuberculosis (TB). You may need a course of treatment for latent (asymptomatic) TB before starting tocilizumab. You'll also be checked for previous hepatitis infection, as tocilizumab may increase the risk of hepatitis being reactivated.

You'll need further cholesterol checks and blood tests every 4–8 weeks while you're on tocilizumab to monitor its effects.

How is it taken?

Tocilizumab may be given:

  • either through a drip into a vein (intravenous infusion) which takes about an hour once every four weeks
  • or as an injection under the skin (subcutaneous injection) once a week using a pre-filled syringe. You, your partner or another family member can learn to give these injections at home.

If you're already having infusions and wish to switch to injections you should speak to your rheumatology team. You'll probably start your injections when your next infusion is due.

If tocilizumab works for you, your symptoms should start to improve in 2–12 weeks. Because it's a long-term treatment it's important to keep taking tocilizumab (unless you have severe side-effects):

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

Side-effects and risks

The most common side-effects of tocilizumab aren't usually serious. They include:

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

Tell your doctor or rheumatology nurse straight away if you have a reaction during or after an infusion or injection.

Tocilizumab can sometimes increase cholesterol levels and you may be asked to see your GP for treatment to reduce these levels. It can also affect liver function tests or reduce the numbers of white cells, or sometimes platelets, in your blood. You might sometimes need to miss one or more treatments, but it's rare to have to stop the drug altogether.

If you have intestinal ulcers or diverticulitis you may be at more risk of infection, which can sometimes lead to bowel perforation. Tell your doctor immediately if you develop stomach pain, particularly if you have a temperature and you notice changes in your bowel habits, such as passing blood.

The long-term side-effects of tocilizumab aren't yet fully understood because it's a relatively new drug. There may be a slightly increased risk of certain cancers when using drugs that affect the immune system, though research so far hasn't confirmed this.

Tocilizumab can make you more likely to pick up infections. It can also make them harder to spot. Tell your doctor or rheumatology nurse if you develop a sore throat or fever, have unexplained bruising, bleeding or paleness, or any other new symptoms that concern you. If any of these symptoms are severe, you should stop taking tocilizumab and see your doctor straight away.

You should also see your doctor if you develop chickenpox or shingles or come into contact with someone who has chickenpox or shingles. These illnesses can be severe if you're on tocilizumab. You may need antiviral treatment, and your tocilizumab may need to be stopped until you're better.

Reducing the risk of infection

Try to avoid close contact with people with severe active infections.

For advice on avoiding infection from food, visit NHS Choices - 10 ways to stop food poisoning.

Effects on other treatments

You may be prescribed tocilizumab alongside other drugs, including methotrexate. However, some medicines may interact with tocilizumab. Check with your doctor before starting any new medications, and remember to mention you're on tocilizumab if you're treated by anyone other than your usual rheumatology team.

Vaccinations

It's usually recommended that people on tocilizumab avoid live vaccines such as yellow fever. However, sometimes a live vaccine may be necessary (for example, rubella immunisation in women of childbearing age).

If you're offered shingles vaccination (Zostavax) it's best if you can have this before starting tocilizumab. Shingles vaccination isn't recommended for people who are already on tocilizumab.

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

Having an operation

If you're going to have an operation you may be advised to stop the tocilizumab for a time before and after surgery – check with your healthcare team.

Alcohol

You can drink alcohol while on tocilizumab. However, if you're also taking methotrexate, keep within the recommended limits (14 units per week for adults), because methotrexate and alcohol can interact and damage your liver.

In some circumstances your doctor may advise lower limits.

Fertility, pregnancy and breastfeeding

We don’t yet know how tocilizumab might affect an unborn baby, so generally women of childbearing age are advised to use contraception during treatment and for three months afterwards. You should speak to your doctor if you become pregnant while taking it.

However, we do know tocilizumab doesn't cross the placenta until 16 weeks of pregnancy so it's unlikely to be harmful if you've taken it in the early stages of pregnancy.

If you're also taking methotrexate you should use contraception for three months after stopping treatment. The guidelines now state that there's no need for men to stop methotrexate when trying to father a child.

We don’t know whether tocilizumab can pass into the breast milk and be harmful to your baby. The current advice is not to breastfeed while you're on tocilizumab.