Glossary
Frequently Asked Questions Frequently Asked Questions

Frequently Asked Questions/Glossary

Below you’ll find some common questions that people have about giant cell arteritis (GCA) and ACTEMRA. Click any of the questions you’re curious about to see the answer. Also, take some time to review our glossary of commonly used terms near the bottom of the page.

Questions about GCA

Giant cell arteritis (GCA) is a type of blood vessel inflammation. The inflammation makes blood vessels narrow, which slows down blood flow. It affects the blood vessels in the head, neck, and heart. It typically appears in women over the age of 50, but it’s seen in men and younger individuals as well.

There is no difference between GCA and temporal arteritis. The 2 terms are different names for the same disease.

GCA can sometimes be difficult to diagnose. This is because its early symptoms can look like symptoms of other common diseases. For this reason, your healthcare professional will try to rule out other possible causes for symptoms. Your healthcare professional may also want to perform a physical exam and/or blood tests.

One common sign of GCA is an enlarged artery on the side of the head. The best way to confirm the presence of GCA is by taking a biopsy in that artery. A biopsy is when sample of cells is taken from the body in order to examine them more closely. A healthcare professional will recommend a biopsy when a test suggests an area of tissue in the body isn't normal. Keep in mind that many patients are diagnosed because of different signs and symptoms, too.

The exact cause of GCA is unknown. Some people with GCA may have a genetic predisposition to the disease. A genetic predisposition means that a person may be more likely to develop a disease based on their genes. However, they may not see any symptoms unless something in the environment triggers the disease.

GCA occurs most often in people over 50. Although it’s rare, GCA does occur in people less than 50 years old. Take some time to learn more about the common signs and symptoms of GCA. Be sure to let your healthcare professional know if you have any of those symptoms.

There may be a few types of healthcare professionals involved in your treatment for GCA. These include rheumatologists and optometrists. If you think you have GCA, make an appointment to see a rheumatologist. They specialize in diseases that are caused directly by inflammation.

There are no known cures for GCA. However, GCA can be controlled with proper treatment. Make sure you speak to your healthcare professional if you feel like you’re not getting the treatment you need. There may be other options available to you.

GCA might affect you in different ways. You might have painful headaches. You might also feel pain and stiffness in the neck, shoulder, and hip areas. Trouble with vision, jaw pain, and scalp tenderness are other common symptoms. To read more about the ways that GCA could affect you, click here.

Questions about ACTEMRA

Steroids play an important role in reducing inflammation by slowing down the immune system. Unlike steroids, ACTEMRA is a biologic. ACTEMRA is believed to specifically block a key source of inflammation within your immune system. Click here to learn more about how ACTEMRA is believed to work.

A biologic is a type of medicine developed using processes that are similar to what happens in your body naturally. Biologics can be used to interact with certain parts of your body, like your immune system. They can also fight inflammation in certain diseases, like GCA.

Access Solutions for ACTEMRA is dedicated to helping you understand your insurance coverage and assistance options. This can help you get the ACTEMRA your doctor prescribed.

Yes. When first prescribed, ACTEMRA is taken with a tapering dose of steroids.

ACTEMRA could help you reduce or eventually replace your steroid treatment. To learn more, review the results from a clinical study.

ACTEMRA is a subcutaneous (under the skin) injection that you can take at home. ACTEMRA is available in a prefilled syringe or the ACTPen® autoinjector. Learn more about the specific differences between the 2 devices.

 

ACTEMRA should be kept in the refrigerator between 36 and 46 degrees. Do not freeze ACTEMRA. You should protect ACTEMRA from light by keeping it in its original package until you’re ready to take a dose.

You may be able to travel with ACTEMRA by placing your syringes or autoinjectors in the ACTEMRA Travel Pack. You can get a free ACTEMRA Travel Pack and sharps disposal container by calling 1-800-ACTEMRA (1-800-228-3672) or by filling out the enrollment form to join the ACTEMRA & You patient support program.

Throw away your used syringes or autoinjectors by placing them in an FDA-cleared sharps disposal container right away after use. You can get a free sharps container by calling 1-800-ACTEMRA (1-800-228-3672) or by filling out the enrollment form to join the ACTEMRA & You patient support program.

There are no known medicines you cannot take with ACTEMRA. You should always talk to your healthcare professional about what medicines you can and cannot take with ACTEMRA. In the meantime, please scroll down for Important Side Effect Information for ACTEMRA, as well as the full Prescribing Information and Medication Guide.

 

Glossary (terms)

Sometimes medical terms can be hard to understand. See below for definitions of important words used throughout this website.

Biologic

A biologic is a type of medicine developed using processes that are similar to what happens in your body naturally. Biologics can be used to interact with certain parts of your body, like your immune system. They can also fight inflammation in certain diseases, like GCA.

Biopsy

A sample of cells taken from the body in order to examine them more closely. A healthcare professional will recommend a biopsy when a test suggests an area of tissue in the body isn’t normal.

FDA-Approved

When a drug is rigorously tested and approved by the US Food and Drug Administration (FDA). Approval happens when the medicine is determined to be safe and effective.

Flares

A flare is a sudden worsening of your disease. It can happen after you haven’t experienced symptoms for a long time. It’s also known as a relapse.

Genetic Predisposition

A genetic predisposition means that a person may be more likely to develop a disease based on their genes. However, they may not see any symptoms unless something in the environment triggers the disease.

Giant Cell Arteritis (GCA)

The most common type of blood vessel inflammation in adults over the age of 50. GCA affects blood vessels in the head, neck, and heart. You may have heard GCA also be referred to as temporal arteritis.

Healthcare Advocate

A person who takes an active role in their own healthcare.

Healthcare Professional

A person that provides a healthcare service to you. This could include your doctor, your nurse, and any other medical professional who takes care of you.

Inflammation

When a part of the body becomes swollen and painful.

Interleukin-6 (IL-6)

A chemical messenger that tells the immune system to attack harmful bacteria and viruses. When your body produces too much IL-6, it causes the immune system to attack healthy cells.

Remission

A decrease or disappearance in signs and symptoms.

Subcutaneous (SC)

Under the skin.

Vasculitis

An inflammation of the blood vessels. The cause is often unknown.

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What does ACTEMRA treat?

ACTEMRA is a prescription medicine called an interleukin-6 (IL-6) receptor antagonist.

ACTEMRA is used to treat:

  • Adults with moderately to severely active rheumatoid arthritis (RA) after at least one other medicine called a disease modifying antirheumatic drug (DMARD) has been used and did not work well
  • Adults with giant cell arteritis (GCA)
  • Patients with active polyarticular juvenile idiopathic arthritis (PJIA) 2 years of age and older 
  • Patients with active systemic juvenile idiopathic arthritis (SJIA) 2 years of age and older

It is not known if ACTEMRA is safe and effective in children with PJIA or SJIA under 2 years of age or in children with conditions other than PJIA or SJIA.

ACTEMRA can cause serious side effects

Serious Infections

ACTEMRA changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people have serious infections while taking ACTEMRA, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider should test you for TB before starting and during treatment with ACTEMRA.

Before starting ACTEMRA, tell your healthcare provider if you have:

  • an infection, think you may have an infection, are being treated for an infection, or get a lot of infections that return. Symptoms of an infection, with or without a fever, include sweating or chills; shortness of breath; warm, red or painful skin or sores on your body; feeling very tired; muscle aches; blood in phlegm; diarrhea or stomach pain; cough; weight loss; burning when you urinate or urinating more than normal
  • any of the following conditions that may give you a higher chance of getting infections: diabetes, HIV, or a weak immune system
  • tuberculosis (TB), or have been in close contact with someone with TB
  • live or have lived, or have traveled to certain parts of the United States where there is an increased chance of getting fungal infections. These parts include the Ohio and Mississippi River valleys and the Southwest
  • hepatitis B or have had hepatitis B

Who should not take ACTEMRA?

Do not take ACTEMRA if you are allergic to tocilizumab, or any of the ingredients in ACTEMRA.

Be sure to talk to your healthcare provider if you see any signs of these serious side effects:

Tears (perforation) of the Stomach or Intestines

If you have diverticulitis (inflammation in parts of the large intestine), talk to your healthcare provider before taking ACTEMRA. Some people taking ACTEMRA may develop a hole in the wall of their stomach or intestines (also known as a perforation). This happens most often in people who also take nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, or methotrexate.

Tell your healthcare provider right away if you see any of these side effects: fever, stomach-area pain that does not go away, or if you see a change in your bowel habits.

Liver problems (Hepatotoxicity)

Some people have experienced serious life-threatening liver problems, which required liver transplant or led to death. Your healthcare provider may tell you to stop taking ACTEMRA if you develop new or worsening liver problems during treatment with ACTEMRA. Tell your healthcare provider right away if you have any of the following symptoms:

  • feeling tired (fatigue)
  • lack of appetite for several days or longer (anorexia)
  • yellowing of your skin or the whites of your eyes (jaundice)
  • abdominal swelling and pain on the right side of the stomach-area
  • light colored stools
  • weakness
  • nausea and vomiting
  • confusion
  • dark “tea-colored” urine

Changes in Blood Test Results

Your healthcare provider should do blood tests before you start receiving ACTEMRA. If you have rheumatoid arthritis (RA) or giant cell arteritis (GCA) your healthcare provider should do blood tests 4 to 8 weeks after you start receiving ACTEMRA for the first 6 months and then every 3 months after that. If you have polyarticular juvenile idiopathic arthritis (PJIA) you will have blood tests done every 4 to 8 weeks during treatment. If you have systemic juvenile idiopathic arthritis (SJIA) you will have blood tests done every 2 to 4 weeks during treatment. These blood tests are to check for the following side effects of ACTEMRA:

  • Low neutrophil count: neutrophils are white blood cells that help the body fight infection
  • Low platelet count: platelets are blood cells that help with clotting, which stops bleeding
  • Increase in liver function test levels
  • Increase in blood cholesterol levels: your cholesterol levels should be checked 4 to 8 weeks after you start receiving ACTEMRA.

Your healthcare provider will determine how often you will have follow-up blood tests. Make sure you get all your follow-up blood tests done as ordered by your healthcare provider.

You should not receive ACTEMRA if your neutrophil and platelet counts are too low or your liver function test levels are too high. Changes in blood test results may cause your healthcare provider to stop your ACTEMRA treatment for a time or change your dose.

Cancer

ACTEMRA may increase your risk of certain cancers by changing the way your immune system works.

Hepatitis B Infection

If you have or are a carrier of the hepatitis B virus (a virus that affects the liver), the virus may become active while you use ACTEMRA. Your healthcare provider may do blood tests before you start treatment with ACTEMRA and while you are using ACTEMRA. Tell your healthcare provider if you have any signs of these symptoms:

  • feel very tired
  • skin or eyes look yellow
  • little or no appetite
  • vomiting
  • clay-colored bowel movements
  • fevers
  • chills
  • stomach discomfort
  • muscle aches
  • dark urine
  • skin rash

Serious Allergic Reactions

Serious allergic reactions, including death, can happen with ACTEMRA. These reactions can happen with any infusion or injection of ACTEMRA, even if they did not occur with an earlier infusion or injection. Tell your healthcare provider before your next dose if you had hives, rash or flushing after your injection.

Contact 911 immediately, as well as your healthcare provider, if you experience any of these reactions:

  • shortness of breath or trouble breathing 
  • swelling of the lips, tongue, or face 
  • chest pain 
  • feeling dizzy or faint 
  • moderate or severe abdominal pain or vomiting

Nervous System Problems

While rare, Multiple Sclerosis has been diagnosed in people who take ACTEMRA. It is not known what effect ACTEMRA may have on some nervous system disorders.

What should I tell my healthcare provider before receiving ACTEMRA?

ACTEMRA may not be right for you. Before receiving ACTEMRA, tell your healthcare provider if you:

  • have an infection 
  • have liver problems 
  • have any stomach-area (abdominal) pain or been diagnosed with diverticulitis or ulcers in your stomach or intestines 
  • have had a reaction to tocilizumab or any of the ingredients in ACTEMRA before 
  • have or had a condition that affects your nervous system, such as multiple sclerosis 
  • have recently received or are scheduled to receive a vaccine 
  • plan to have surgery or a medical procedure 
  • have any other medical conditions 
  • plan to become pregnant or are pregnant. It is not known if ACTEMRA will harm your unborn baby. 
  • plan to breast-feed or are breast-feeding. You and your healthcare provider should decide if you will take ACTEMRA or breast-feed. You should not do both. 
  • are taking any medications, including prescription and nonprescription medicines, vitamins, and herbal supplements.

The most common side effects of ACTEMRA include:

  • upper respiratory tract infections (common cold, sinus infections)
  • headache
  • increased blood pressure (hypertension)
  • injection site reactions

ACTEMRA & Pregnancy

Tell your healthcare provider if you are planning to become pregnant, are pregnant, plan to breast-feed, or are breast-feeding. You and your healthcare provider should decide if you will take ACTEMRA or breast-feed. You should not do both. If you are pregnant and taking ACTEMRA, join the pregnancy registry. The purpose of this registry is to check the health of the pregnant mother and her baby. To learn more, call 1-877-311-8972 or talk to your healthcare provider to register.

Tell your healthcare provider if you have any side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Genentech at 1-888-835-2555.

For more Important Safety Information, please see full Prescribing Information and the Medication Guide, including Serious Side Effects.