Tocilizumab

• You must see your rheumatologist regularly to make sure the treatment is working and check for possible side effects.
• You should have regular blood tests as suggested by your rheumatologist.
• It is important to tell your rheumatologist if you have a new serious illness such as a serious infection, cancer, heart failure etc.
• If you are worried about any side effects, you should contact your rheumatologist as soon as possible.
• If you stop tocilizumab for any reason, you must contact your rheumatologist. if you failure to do this, your treatment may no longer be funded.
• If you plan to become pregnant, you must discuss the timing with your rheumatologist.

If you have arthritis, you may notice some relief of joint swelling, pain and stiffness within the first 8 weeks of treatment. 
If you have giant cell arteritis, tocilizumab is can be used together with steroids (prednisolone) and/or other antirheumatic drugs to control your disease and symptoms. Tocilizumab may help to shorten the time you take high doses of steroids, to minimise overall side effects from treatment. 

If tocilizumab treatment is stopped for more than a few weeks, there is a risk that your condition will get worse again. Continue with your treatment unless advised to stop by your rheumatologist or unless side effects develop (see Side effects).
If you stop tocilizumab for any reason, you must contact your rheumatologist. Failure to do so may mean that your continued treatment may no longer be funded by the PBS. 

Tocilizumab can be given as an injection under the skin in your belly or thigh, or a drip (infusion) into the vein. Injections are given every week (or two-weekly in some cases), while infusions are given every 4 weeks. The infusion normally takes one hour and is followed by a period of observation to make sure you don’t have any side effects. 

What is the dosage?

When injected under the skin, the dose is 162mg.The infusion dose is based on body weight so each person's dose may be different. 

Can other arthritis medicines be taken with tocilizumab?

Tocilizumab may be safely used with other arthritis medicines including:

• other DMARDs such as methotrexate
• steroid medicines such as prednisolone tablets or cortisone injections into the joint 
• pain medicines such as paracetamol (Panadol)
• anti-inflammatory medicines such as naproxen (Naprosyn) or ibuprofen (Brufen, Nurofen) can be used by some patient taking tocilizumab although this should be discussed with your doctor beforehand.

Some people experience side effects with this treatment. Contact your doctor if you have any concerns about possible side effects. Many side effects disappear when tocilizumab treatment is stopped.

Most common possible side effects 

• For people having a drip (infusion), side effects can occur during the infusion itself. These may include fever or chills, itch, dizziness, headache, chest pain, shortness of breath or changes in blood pressure. These effects are more likely to occur during the first or second infusion. If side effects occur, they can usually be treated with steroids, antihistamines and paracetamol. These medicines can also be given before your infusion if your rheumatologist deems it necessary.
• Some people who have injections under the skin can get a reaction at the site of the injection. This might include redness, itch or swelling. These effects can usually be managed so let your rheumatologist know if it occurs. 
• Other common possible side effects include:
  • headache or cough 
  • tummy discomfort
  • rash and itching- these are usually mild, and do not usually need you to stop treatment.
• Liver enzymes: Tocilizumab can cause liver tests to rise in less than half of people. The tests return to normal in most patients while still being treated with the medicine. Your doctor will check for this with blood tests.
• Cholesterol level: Tocilizumab may cause an increase in cholesterol and triglyceride levels. While high cholesterol and triglyceride levels are risk factors for heart attack and stroke, the long-term effect of this in patients with rheumatoid arthritis is uncertain. It returns to normal once the medicine is stopped. Even if cholesterol levels rise while taking tocilizumab, patients can often continue taking tocilizumab with ongoing monitoring. In some cases, patients may require cholesterol-lowering medicines.
• As tocilizumab affects the immune system, mild infections such as colds, runny nose, sinusitis may occur more often. Treatment may need to be stopped for a short time so contact your doctor for advice.

Less common or rare possible side effects

• Blood counts: Tocilizumab can cause a drop in the number of white blood cells, which are needed to fight infection. This is monitored carefully with regular blood tests. 
• Serious infections such as pneumonia are more common in patients treated with tocilizumab. Tocilizumab can mask fever and other signs of infection. Body temperature and blood test markers of infection (including c-reactive protein (CRP) and erythrocyte sedimentation rate (ESR)) may be normal even with a serious infection.
• Tuberculosis (TB) infection is seen rarely in Australia, however screening for TB is needed before treatment begins (see below).
• Perforation of the stomach or gut (a hole in the bowel wall) has been reported rarely in patients treated with tocilizumab. This can cause symptoms such as abdominal pain, bloody diarrhoea and fever.

Infections

• If you have a serious infection of any kind (for example, if you need antibiotics or a stay in hospital) treatment with tocilizumab needs to be stopped and only re-started once the infection is treated successfully.
• X-rays and other tests may be required to exclude some chronic infections before you start bDMARDs.

Precautions with other diseases

• People who have had bowel problems such as ulcers or diverticulitis should be careful when using tocilizumab as this medicine can hide the warning signs of a serious bowel problem (e.g. a tear or hole in the bowel). Because of this, you might not notice symptoms until the problem is worse. Always talk to your rheumatologist about your risks and what to watch out for.

Use with other medicines

• Other medicines you take can affect tocilizumab and tocilizumab can affect your other medicines. You should tell all your doctors about all medicines you are taking or plan to take. This includes over-the-counter or herbal/naturopathic medicines. 

Vaccines

If you are prescribed tocilizumab you should not be immunised with ‘live’ vaccines such as:

• MMR (measles, mumps and rubella), OPV (oral polio virus), BCG (Bacillus Calmette Guerin), Japanese Encephalitis or Yellow Fever. Talk with your rheumatologist before receiving any vaccines. 
• Pneumococcal, COVID-19 vaccines and the yearly seasonal flu vaccinations are encouraged. 
• A shingles vaccine that is not live (Shingrix) is now available which is safe to be given while on tocilizumab. Discuss with your rheumatologist if this is right for you.
• For more information on vaccination including the COVID-19 vaccination go to the Vaccinations in Rheumatology page on our website.

Surgery

If you require surgery for any reason, you should discuss this with your rheumatologist as some people need to stop taking tocilizumab before surgery.

Alcohol

You may drink alcohol while taking tocilizumab. However, if you are also taking methotrexate, you should be cautious about how much alcohol you drink. 

Cancer risk

People with rheumatoid arthritis and some autoimmune diseases are at increased risk of lymphoma and some other cancers. Most studies to date have not shown an increased risk of cancer due to tocilizumab, in patients with rheumatoid arthritis. There is less certainty about the relationship between tocilizumab and cancer when it is used to treat other diseases.
Skin cancers have been reported in people taking tocilizumab and yearly skin checks are recommended.

Pregnancy, breastfeeding and fertility

• There is limited information available regarding the possible effects of tocilizumab on the unborn baby. If you plan to become pregnant, it is important to discuss this with your rheumatologist. 
• There is limited information on breastfeeding while using tocilizumab. Please discuss this with your rheumatologist. 
• More detailed information is available here.

• Keep the medicine refrigerated (between 2-8 degrees), even when travelling. 
• It can be taken out of refrigeration and brought to room temperature 30-45 minutes before injection. 
• Keep all medicines out of reach of children.

Disposal

• After injecting tocilizumab, the used syringes/ needles should be placed in a puncture resistant container, like a sharps container.
• Dispose of your sharps container according to your state or local regulations. If unsure, ask your pharmacist or refer to the ARA Guide to Safe Disposal of Sharps.
• If your doctor tells you to stop using tocilizumab, or the expiry date has passed, ask your pharmacist what to do with the leftover medicine.