Parent and Caregiver Resources
Make treatment easier for your child
Caring for a child with arthritis is not always easy. But there are resources available to help. In addition to the information listed below, the child's doctor or staff can be a useful asset when you need it most. It's always a good idea to partner closely with them during your child's treatment.
Talking about your child’s condition
With a disease as challenging as SJIA, it's essential to keep the lines of communication open. Explaining to others what your child is going through can go a long way in ensuring that he or she is taken care of appropriately. Equally as important is talking to your child about the disease. Below are tips to keep in mind when speaking to various audiences including your child, your child’s school, and even your family.
Speaking with your child about the disease
While it may be challenging to discuss health situations with your
child, it is important to talk with your child about his or her
disease. Below are 5 tips on how to communicate with your child.
1. Set a positive tone: How you handle and discuss delicate information will help set the tone for how your child feels and talks about his or her condition.
2. Be up front: You may want to protect your child from difficult situations, but withholding information may actually make him or her feel there is something to be embarrassed about or feared.
3. Keep communication open: Talking and listening openly helps ensure that if your child starts feeling worse or gets new symptoms, you can consult your child's doctor as soon as possible.
4. Be supportive: Children may feel ashamed of "being different" from their friends. Having a supportive family can make children feel more confident and empowered about facing the disease.
5. Consider counseling: Talking to someone outside of the family, like a counselor or psychologist, can provide additional insights while helping your child work through his or her feelings about the disease.
Speaking with your child's school
With the amount of time children spend in school, it may be necessary to talk about your child’s condition with teachers, school counselors, and nurses. When they’re aware of your child’s needs, they can help make your child’s life easier when you’re not around. Certain changes may need to be made so your child can get the most out of the school day.
Your child may:
- Be absent from school because of flare-ups of pain, or to travel for ACTEMRA infusions
- Need extra time for homework and tests
- Have side effects from treatments for flare-ups during the school day and may need medical assistance
- Need extra time to get to and from class, and may need to leave one class early to make the next
- Be tired or distracted during the day, which can affect classroom concentration
Speaking with your family about your child’s condition
Raising a child with SJIA can impact a lot of people in your child’s life, like family, friends, and caregivers. That larger support network can make the child feel comfortable and secure knowing there are a lot of people he or she can count on.
Family members should know:
- If you are caring for more than one child, it may be difficult to give everyone the attention he or she needs. Children may feel neglected if one of their siblings is receiving a lot of attention, good or bad
- Managing SJIA can be difficult, and every family situation is different. Your child’s doctor can direct you to valuable resources that can help the whole family manage the disease, but don’t be afraid to ask questions about your family’s unique circumstances
Tips for helping your kids
There are many things to consider when raising a child with systemic juvenile idiopathic arthritis (SJIA). Your child's doctor and healthcare team can answer your questions. Here are some tips to consider while your child is being treated for SJIA.
Healthy diet: It's important that your child continues to eat a healthy diet no matter what treatment for SJIA he or she is on.
Exercise: Encourage your child to exercise and participate in gym class and school sports as much as possible based on guidelines set by your child's doctor. Walking, riding a bike, and swimming are considered good physical activities for children with forms of arthritis. Remember to always talk to your child's doctor about exercises that are safe and beneficial for your child before starting a new routine.
Physical and occupational therapy: Physical and occupational therapy can make it easier for your child to move swollen joints and maintain a good range of motion. Always talk to your child's doctor about therapy that is safe and beneficial for your child.
Joint stiffness: This is common after waking up in the morning or from a nap. Taking a warm shower or bath, wearing warmer clothing, or using a hot compress can help relieve stiffness. Some children do better with a cold compress, so experiment with different treatments to see which works best.
Medications: Monitor your child's medications in addition to ACTEMRA and make sure that all are being taken at the right times and in the right amounts as prescribed. Keep a list of your child's current medications with you for doctor visits, or if you need to go to the hospital for any reason.
Routines: Normal routines and habits should be maintained as much as possible to help keep the physical and emotional effects of your child's condition to a minimum.
Rest: Ensure your child gets plenty of rest to keep from getting overtired.
School: Stress the importance of
going to school, even when your child feels morning stiffness or
Communication with doctors: Discuss your concerns with your child's doctor and other healthcare partners. They are there to answer your questions in addition to treating your child.
Activities: When your child isn't feeling well, get creative with activities. Fun activities like drawing, writing, and painting can be less stressful on the joints and also provide ways for your child to express how he or she feels.
Friends: You can also create opportunities for your child to hang out with friends if he or she isn't feeling well. Throw a sleepover or host a movie night, so your child's friends can come over. Staying in touch with friends is an important way to show your child that the illness doesn’t have to keep him or her from having a social life.
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To receive a free ACTEMRA travel pack and sharps container for safe disposal of ACTEMRA syringes and ACTPen® autoinjectors, call 1-800-ACTEMRA (1-800-228-3672).
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More resources on the Web
Learn more about arthritis care and support on the Internet. Some external sites to visit are included below.
Also, social media may be a good resource for finding additional information, support groups, forums, and a sense of community.
This website is a nonprofit information source for children's health. The site includes a section on juvenile idiopathic arthritis.
American College of Rheumatology
Rheumatology.org is a great source of research and patient education on rheumatic diseases. Read patient-focused articles on diseases and conditions, types of medications, and other related topics.
Arthritis Care is the largest charity in the UK dedicated to arthritis. The organization's website offers a great deal of information on the disease, including an in-depth section geared for teenagers.
A social network for people living with arthritis, Arthritis Connect enables members to start conversations, meet others, share treatments, and much more.
This nonprofit organization's website offers information on arthritis and related conditions, including an entire section dedicated to juvenile arthritis. You'll find support groups, a pain management center, healthy living articles, and more.
These websites are not under the control of or maintained by Genentech. Including them here does not constitute an endorsement by Genentech of those other websites, the content displayed therein, or the persons or entities associated therewith.
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
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
- nausea and vomiting
- 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.
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
- clay-colored bowel movements
- 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)
- 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.