Skip To Main Content
Patient Resources. Image of 2 people walking by a lake

Living with SSc-ILD comes with its own challenges. You do not have to face these challenges alone. There are many resources available to help you during your treatment journey.

Community support can help you understand the physical and emotional aspects of SSc-ILD. There are many ways to connect with patients and caregivers like you. These organizations are a good place to start. 

SSc-ILD Community

Community Support

To learn more about SSc-ILD and to be connected with others in the community, visit*:

*Selecting any of these links will take you to a site that is not owned or controlled by Genentech, Inc. Genentech, Inc. makes no representation as to the accuracy of the information contained on sites we do not own or control. Genentech does not recommend and does not endorse the content on any third-party websites. Your use of third-party websites is at your own risk and subject to the terms and conditions of use for such sites.

Injection Training Video

For information on starting ACTEMRA, and for a step-by-step video on how to use ACTEMRA,

Sign up for your free Travel Pack and sharps container

Simply complete the form below to receive your free Travel Pack and sharps container. All fields are required unless marked optional.

Travel Pack

What is your relationship to the person with SSc-ILD?

To be eligible for this resource, you or your loved one must be on ACTEMRA treatment.

If you are taking Actemra, you may sign up to receive a free optional travel pack and sharps container.

The Travel Pack will help you travel with your ACTEMRA SC. It includes an ice pack and a TSA card to help you bring your ACTEMRA through the airport. The sharps container will allow you to safely dispose of your ACTEMRA injection devices.

Contact Information

By submitting this form, I am requesting disease education and other materials from and on behalf of Genentech and its affiliates. This may include information about products and services, including co-pay assistance or other patient support, opportunities to participate in surveys or provide feedback, or other topics. I understand that my personal information, some of which may be considered sensitive information, such as information about health conditions, will be used and disclosed as described in Genentech’s Privacy Policy, and that I may be contacted using the information I have provided. I understand providing this agreement is voluntary and plays no role in getting my medicine, and that I may opt out of receiving this information at any time by calling 877-436-3683. By submitting this form, I confirm that I am 18 years of age or older and that I agree to the Terms & Conditions.

Thank you

Your request has been submitted.

ACTEMRA® (tocilizumab) has over 10 years of experience across multiple diseasesa,b

aIncludes FDA-approved uses for conditions other than SSc-ILD.
bIncludes only Phase III and Phase IV studies.

Globe

ACTEMRA has been used to treat 1,600,000+ people worldwidec

cAccording to the ACTEMRA Periodic Benefit-Risk Evaluation Report (PBRER). The 1,600,000+ number includes patients treated during clinical trials and in medical practices through April 10, 2020. Patients treated in medical practices is estimated based on the volume of product sold.

Important Safety Information

INDICATIONS

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
  • To treat adults with giant cell arteritis (GCA)
  • To treat patients with active polyarticular juvenile idiopathic arthritis (PJIA) 2 years of age and older 
  • To treat patients with active systemic juvenile idiopathic arthritis (SJIA) 2 years of age and older
  • For slowing the rate of decline in lung function in adults with systemic sclerosis-associated interstitial lung disease (SSc-ILD) (also known as scleroderma-associated ILD).
  • To treat hospitalized adults with coronavirus disease 2019 (COVID-19) receiving systemic corticosteroids and requiring supplemental oxygen or mechanical ventilation.
  • ACTEMRA is not approved for subcutaneous use in people with COVID-19.

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 assess you for TB before starting, during and after treatment with ACTEMRA (except if you have COVID-19).

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

If you have COVID-19, your healthcare provider should monitor you for signs and symptoms of new infections during and after treatment with ACTEMRA.

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, new onset 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), or systemic sclerosis-interstitial lung disease (SSc-ILD) 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. Stop taking ACTEMRA, contact your healthcare provider, and get emergency help right away if you have any of the following signs of a serious allergic reaction:

  • swelling of the face, lips, mouth, or tongue
  • trouble breathing
  • wheezing
  • severe itching
  • skin rash, hives, redness, or swelling outside of the injection site area
  • dizziness or fainting
  • fast heartbeat or pounding in your chest (tachycardia)
  • sweating

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

Tell your healthcare provider about any side effect that bothers you or does not go away. These are not all the possible side effects of ACTEMRA.

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.

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

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