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.
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 pain.
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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ACTEMRA is a prescription medicine called an interleukin-6 (IL-6) receptor antagonist.
ACTEMRA is used:
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 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 and during treatment with ACTEMRA (except if you have COVID-19).
Before starting ACTEMRA, tell your healthcare provider if you have:
If you have COVID-19, your healthcare provider should monitor you for signs and symptoms of new infections during and after treatment with 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:
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.
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:
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:
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.
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:
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:
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.
ACTEMRA may not be right for you. Before receiving ACTEMRA, tell your healthcare provider if you:
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 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.
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