What to Know About Actemra (Tocilizumab)

An IL-6 Blocker to Treat Rheumatoid Arthritis and Other Conditions

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Actemra (tocilizumab) is a biologic therapy used to treat certain inflammatory conditions, including rheumatoid arthritis. Specifically, Actemra blocks a specific type of receptor important in the immune system: IL-6 (interleukin-6).

Actemra also has been used to treat cytokine storm syndrome, which is part of the reason researchers are currently studying its potential use in treating COVID-19. It can be given intravenously or as an injection into the fatty layer beneath the skin.

Actemra (tocilizumab) injection
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Uses

Currently, Actemra is FDA approved for adults with rheumatoid arthritis. Specifically, it is approved for people with rheumatoid arthritis who have tried methotrexate or a similar type of drug but haven’t had a good response. Actemra can be taken over the long-term to help prevent future symptoms.

Actemra is also approved for a condition called juvenile idiopathic arthritis in children 2 years of age or older. This childhood condition usually mostly affects the joints, but the systemic version of the disease can affect wider body systems like the internal organs and the eyes.

Actemra is FDA approved for the systemic version of the disease and for a subtype that affects multiple joints. It can help prevent these problems from coming up again.

Actemra carries an FDA approval for treating adults who have a condition known as giant-cell arteritis. This inflammatory condition affects certain blood vessels and can cause headache, vision symptoms, and even heart attack and stroke. Again, Actemra can be used to try and prevent future symptoms.

The FDA also granted approval to Actemra for cytokine storm syndrome. This is a severe, maladaptive immune response that can cause life-threatening inflammation.

Such a response can happen after certain types of immunotherapies, such as CART therapy (chimeric antigen receptor-modified T cells), designed to treat certain kinds of B cell cancers. Cytokine storm syndrome can also occur as a response to certain types of infections, such as the flu.

Off-label Use in COVID-19

Because of this history of use in cytokine storm syndrome, researchers have been testing to see if Actemra might be useful for some people who have COVID-19. It’s thought that some individuals with severe symptoms of COVID-19 may have cytokine storm syndrome.

This might be partly caused by high levels of the immune molecule, IL-6. By blocking its receptor, it is thought that Actemra might reduce life-threatening symptoms, such as those coming from severe lung involvement.

Because of this, researchers have attempted to study its effectiveness in clinical trials. One study of 65 patients with COVID-19 found no difference in improvements in patients treated with Actemra compared to those treated with standard care only.

However, a study of 544 patients with severe symptoms found that treatment with Actemra seemed to reduce the chance that patients would need ventilators while lowering their risk of death. To definitively see if some people might benefit, we will need to see further results from ongoing studies.

Before Taking

Your clinician will need to give you a thorough medical evaluation before starting Actemra. You’ll need to talk about any current symptoms you are having. For example, if you have signs or symptoms of an ongoing infection, you should wait to start Actemra.

You’ll also need to talk about your medical history. For example, your clinician should ask about whether you’ve had health conditions like tuberculosis, liver disease, or HIV.

It’s important that your health care professional make sure that you don’t have any other conditions that make taking Actemra a bad idea, like anything that makes you more prone to getting certain infections.

It’s likely that Actemra will not be the first treatment that you try for your medical condition. In some cases, other treatments are available that should be tried first. For example, children with juvenile idiopathic arthritis usually only start Actemra after they have tried other therapies, like methotrexate.

Precautions and Contraindications

People starting Actemra need to get a test for tuberculosis (a TB test) before treatment. This might involve getting a chest X-ray or a TB skin test.

Some people have dormant TB infections that aren’t giving them any symptoms. But because of the way it affects the immune system, starting Actemra might make a TB infection more active. If you do have a TB infection, you’ll need to be treated before you start Actemra.

Similarly, some people may have an infection with the hepatitis B virus and not know it. In this case, starting Actemra might make that infection more active. Before treatment, your doctor should test to make sure you aren’t infected.

You may not be able to start taking Actemra right away if you’ve recently taken certain kinds of vaccines. You also shouldn’t get this type of vaccine (called a “live vaccine”) while you are taking Actemra.

You also may need certain blood tests before you start taking Actemra. For example, these may include liver tests, tests for certain kinds of blood cells, and cholesterol tests.

This will give your doctor a baseline to help monitor potential side effects. This information might also influence whether Actemra is the right medication for you. For example, if you have a low number of certain blood cells or platelets, your doctor might recommend another therapy instead.

Talk to your doctor if you are pregnant, thinking of becoming pregnant, or breastfeeding. It is not known if Actemra increases the chance of birth defects or death of the fetus, but the risks should be weighed with your healthcare provider, and it shouldn’t be used unless clearly necessary.

Other IL-6 Blocking Therapies

Another more recently available biologic therapy blocking the IL-6 receptor is Kevzara (sarilumab). It is approved for similar use only in rheumatoid arthritis.

Other Biologic Therapies

Depending on the context, you might be able to try other biologic therapies instead of Actemra. For rheumatoid arthritis, for example, multiple types of biologic therapies are available, in several different therapy classes, including TNF blockers like Humira (adalimumab).

In contrast, for giant cell arteritis, Actemra is currently the only FDA approved biologic therapy available. Don’t hesitate to talk to your doctor about all your treatment options.

Dosage

Actemra can be given through subcutaneous injection or through an intravenous line. When given intravenously, therapy is typically given once every four weeks. When given through an injection, it is typically administered every week. Dosage and frequency may vary based on your weight, age, and the medical context.

Actemra can be taken as a medication on its own. However, some evidence suggests that it may be more effective when taken with the medication methotrexate. In fact, Actemra is often prescribed to be taken in addition to other medications, such as methotrexate or sulfasalazine.

Sometimes Actemra is taken along with glucocorticoids for a time as well. It is not recommended that Actemra be taken along with other biologic-type therapies.

How to Take and Store

When given by injection, Actemra can be taken via a pre-filled syringe or via a kind of injection pen. These are stored in the refrigerator until ready to be used.

Your doctor will provide a step-by-step guide of how you can administer the therapy. If you choose to have Actemra delivered by intravenous line, you will need to have this done at your doctor’s office.

Side Effects

Common

Some of the relatively common side effects from Actemra therapy are as follows:

  • Upper respiratory tract infection symptoms (like from a cold)
  • Elevated cholesterol levels
  • Headache
  • Elevated blood pressure
  • Skin irritation at the injection site

Tests to Monitor For Complications

To monitor for certain complications, you’ll need to have blood tests every few months or so. For example, this may include tests of certain blood cells and platelets, cholesterol tests, and liver tests. If your lab tests are abnormal, you may need to switch to another treatment.

Severe

Less commonly, Actemra can have serious side effects. Actemra carries a risk of gastrointestinal perforation, primarily in people who also have underlying diverticulitis.

It sometimes causes serious liver damage. In some people, it may increase the risk of a serious cardiovascular event, like a heart attack. Serious and life-threatening allergic reactions are also a risk, as they are for all biologic therapies.

Warnings

Actemra has a couple of risks that warrant warnings.

Risk of Serious Infection

Actemra can also increase your risk of infection, including some infections that might be serious such as pneumonia, cellulitis, and urinary tract infections.

Because of the way Actemra affects your body’s immune system, it’s possible that your body will have a harder time fighting off certain kinds of infections that wouldn’t affect most people. An example might be a serious fungal infection that requires hospitalization for treatment.

Risk of Cancer

To date, no information has indicated that Actemra increases the risk of cancer. But because of the way Actemra affects your immune system, this is a theoretical concern. However, it has been suggested that Actemra poses less of a potential cancer risk than other similar therapies such as TNF-inhibitors, whose cancer risk has been more controversial.

Emergency Medical Attention

Call your doctor right away if you have any potentially serious symptoms, such as shortness of breath, bloody cough, fever and chills, or severe belly pain. Call 911 for life-threatening symptoms such as chest pain or sudden, severe difficulty breathing after injection.

Weighing Risks and Benefits

It’s important to keep these risks in perspective. Roughly speaking, Actemra seems to have similar risks and safety concerns compared to some other biologic therapies used to treat rheumatoid arthritis, such as Orencia (abatacept), Truxima (rituximab), and Humira (adalimumab).

Though Actemra does carry certain risks, it can be a very helpful therapy for some people. Weigh the risks and benefits in your situation with your healthcare provider. 

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