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.

You may notice some relief of joint swelling, pain and stiffness within the first 8 weeks of 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 a drip (infusion) into the vein or as an injection under the skin in your belly or thigh. Infusions are given every 4 weeks, while the injections are given every week or weekly in some cases. 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?

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

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 and can usually be reduced by giving steroids, antihistamines and paracetamol before the treatment. 
• 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.
• 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 and 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.

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 with diverticulitis may not be treated with tocilizumab as the medicine may increase risk of getting a hole in the gut wall (see above).

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 are at increased risk of lymphoma and some other cancers. Medicines that affect your immune system like tocilizumab may increase this risk.
Skin cancers have been reported in people taking tocilizumab and yearly skin checks are recommended.

Pregnancy, breastfeeding and fertility

• Limited information regarding the possible effects of tocilizumab on the unborn baby is available. 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.

• Store tocilizumab in a cool, dry place, away from direct heat and light in your fridge.
• Once removed from the fridge, tocilizumab that is given under the skin must be administered within 8 hours and should not be kept above 30°C.
• 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.