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 rheumatologist 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 PJIA or 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 rheumatologist 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 PJIA or 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 PJIA or 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 polyarticular juvenile idiopathic arthritis (PJIA) or systemic juvenile idiopathic arthritis (SJIA). Your child's rheumatologist and healthcare team can answer your questions. Here are some tips to consider while your child is being treated for PJIA or 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 rheumatologist. Walking, riding a bike, and swimming are considered good physical activities for children with forms of arthritis. Remember to always talk to your 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 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 rheumatologist 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 rheumatologist 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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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.
A publication of the Arthritis Foundation®, this lifestyle magazine hosts a website featuring a variety of tools and information on arthritis.
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.
Before reading more, please see the Important Side Effect Information for ACTEMRA
This information does not take the place of talking with your healthcare provider about your medical condition or your treatment.
INDICATION AND IMPORTANT SIDE EFFECT INFORMATION
What is ACTEMRA?
ACTEMRA is a prescription medicine that targets the interleukin-6 (IL-6) signaling pathway. ACTEMRA is used to treat:
- Adults with moderately to severely active rheumatoid arthritis (RA) after at least one other medicine called a Disease Modifying Anti-Rheumatic Drug (DMARD) has been used and did not work well.
- Adults with giant cell arteritis (GCA).
- People with active PJIA ages 2 and above.
- People with active SJIA ages 2 and above.
ACTEMRA is not approved for subcutaneous use in people with PJIA or SJIA.
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.
What is the most important information I should know about ACTEMRA?
ACTEMRA can cause serious side effects including:
1. Serious Infections.
ACTEMRA is a medicine that affects your immune system. ACTEMRA can lower the ability of your immune system to fight infections. 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 ACTEMRA.
- Your healthcare provider should monitor you closely for signs and symptoms of TB during treatment with ACTEMRA.
You should not start taking ACTEMRA if you have any kind of infection unless your healthcare provider says it is okay.
Before starting ACTEMRA, tell your healthcare provider if you:
- think you have an infection or have symptoms of an infection, with or without a fever, such as:
- sweating or chills
- shortness of breath
- warm, red, or painful skin or sores on your body
- feel very tired
- muscle aches
- blood in phlegm
- diarrhea or stomach pain
- weight loss
- burning when you urinate or urinating more often than normal
- are being treated for an infection
- get a lot of infections or have infections that keep coming back
- have diabetes, HIV, or a weak immune system. People with these conditions have a higher chance for infections.
- have TB, or have been in close contact with someone with TB
- live or have lived, or have traveled to certain parts of the country (such as the Ohio and Mississippi River valleys and the Southwest) where there is an increased chance for getting certain kinds of fungal infections (histoplasmosis, coccidiomycosis, or blastomycosis). These infections may happen or become more severe if you use ACTEMRA. Ask your healthcare provider, if you do not know if you have lived in an area where these infections are common.
- have or have had hepatitis B
After starting ACTEMRA, call your healthcare provider right away if you have any symptoms of an infection. ACTEMRA can make you more likely to get infections or make worse any infection that you have.
2. Tears (perforation) of the stomach or intestines.
- Tell your healthcare provider if you have had diverticulitis (inflammation in parts of the large intestine) or ulcers in your stomach or intestines. Some people taking ACTEMRA get tears in their stomach or intestine. 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 have fever and stomach-area pain that does not go away, and a change in your bowel habits.
3. Changes in certain laboratory 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 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 off bacterial infections.
- low platelet count. Platelets are blood cells that help with blood clotting and stop bleeding.
- increase in certain liver function tests.
- increase in blood cholesterol levels. You may also have changes in other laboratory tests, such as your blood cholesterol levels. Your healthcare provider should do blood tests to check your cholesterol levels 4 to 8 weeks after you start receiving ACTEMRA, and then every 6 months after that.
You should not receive ACTEMRA if your neutrophil or platelet counts are too low or your liver function tests are too high.
Your healthcare provider may stop your ACTEMRA treatment for a period of time or change your dose of medicine if needed because of changes in these blood test results.
ACTEMRA may increase your risk of certain cancers by changing the way your immune system works. Tell your healthcare provider if you have ever had any type of cancer.
See “What are the possible side effects with ACTEMRA?” for more information about side effects.
Who should not take ACTEMRA?
Do not take ACTEMRA: if you are allergic to tocilizumab, or any of the ingredients in ACTEMRA. See the end of this Medication Guide for a complete list of ingredients in ACTEMRA.
What should I tell my healthcare provider before receiving ACTEMRA?
Before you receive ACTEMRA, tell your healthcare provider about all of your medical conditions, including if you:
- have an infection. See “What is the most important information I should know about ACTEMRA?”
- 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.
- All vaccines should be brought up-to-date before starting ACTEMRA.
- People who take ACTEMRA should not receive live vaccines.
- People taking ACTEMRA can receive non-live vaccines.
- 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.
Pregnancy Registry: Genentech has a registry for pregnant women who take ACTEMRA. The purpose of this registry is to check the health of the pregnant mother and her baby. If you are pregnant or become pregnant while taking ACTEMRA, talk to your healthcare provider about how you can join this pregnancy registry or you may contact the registry at 1-877-311-8972 to enroll.
- plan to breastfeed or are breastfeeding. You and your healthcare provider should decide if you will take ACTEMRA or breastfeed. You should not do both.
Tell your healthcare provider about all of the medicines you take, including prescription, over-the-counter medicines, vitamins and herbal supplements. ACTEMRA and other medicines may affect each other causing side effects.
Especially tell your healthcare provider if you take:
- any other medicines to treat your RA. You should not take etanercept (Enbrel®), adalimumab (Humira®), infliximab (Remicade®), rituximab (Rituxan®), abatacept (Orencia®), anakinra (Kineret®), certolizumab (Cimzia®), or golimumab (Simponi®), while you are taking ACTEMRA. Taking ACTEMRA with these medicines may increase your risk of infection.
- medicines that affect the way certain liver enzymes work. Ask your healthcare provider if you are not sure if your medicine is one of these.
Know the medicines you take. Keep a list of them to show to your healthcare provider and pharmacist when you get a new medicine.
How will I receive ACTEMRA?
Into a vein (IV or intravenous infusion) for Rheumatoid Arthritis, PJIA, or SJIA:
- If your healthcare provider prescribes ACTEMRA as an IV infusion, you will receive ACTEMRA from a healthcare provider through a needle placed in a vein in your arm. The infusion will take about 1 hour to give you the full dose of medicine.
- For rheumatoid arthritis or PJIA you will receive a dose of ACTEMRA about every 4 weeks.
- For SJIA you will receive a dose of ACTEMRA about every 2 weeks.
- While taking ACTEMRA, you may continue to use other medicines that help treat your rheumatoid arthritis, PJIA, or SJIA such as methotrexate, non-steroidal anti-inflammatory drugs (NSAIDs) and prescription steroids, as instructed by your healthcare provider.
- Keep all of your follow-up appointments and get your blood tests as ordered by your healthcare provider.
Under the skin (SC or subcutaneous injection) for Rheumatoid Arthritis or Giant Cell Arteritis:
- See the Instructions for Use at the end of this Medication Guide for instructions about the right way to prepare and give your ACTEMRA injections at home.
- ACTEMRA is available as a single-use Prefilled Syringe.
- You may also receive ACTEMRA as injection under your skin (subcutaneous). If your healthcare provider decides that you or a caregiver can give your injections of ACTEMRA at home, you or your caregiver should receive training on the right way to prepare and inject ACTEMRA. Do not try to inject ACTEMRA until you have been shown the right way to give the injections by your healthcare provider.
- Your healthcare provider will tell you how much ACTEMRA to use and when to use it.
What are the possible side effects with ACTEMRA?
ACTEMRA can cause serious side effects, including:
- See “What is the most important information I should know about ACTEMRA?”
- Hepatitis B infection in people who carry the virus in their blood. If you are a carrier of the hepatitis B virus (a virus that affects the liver), the virus may become active while you use ACTEMRA. Your doctor may do blood tests before you start treatment with ACTEMRA and while you are using ACTEMRA. Tell your healthcare provider if you have any of the following symptoms of a possible hepatitis B infection:
- feel very tired
- dark urine
- skin or eyes look yellow
- clay-colored bowel movements
- stomach discomfort
- skin rash
- little or no appetite
- muscle aches
- 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. Seek medical attention right away if you have any of the following signs of a serious allergic reaction:
- 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.
The most common side effects of ACTEMRA include:
- upper respiratory tract infections (common cold, sinus infections)
- increased blood pressure (hypertension)
- injection site reactions
Call your doctor for medical advice about 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.
General information about the safe and effective use of ACTEMRA.
Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Do not give ACTEMRA to other people, even if they have the same symptoms that you have. It may harm them. You can ask your pharmacist or healthcare provider for information about ACTEMRA that is written for health professionals.
For more information, call 1-800-ACTEMRA.
What are the ingredients in ACTEMRA?
Active ingredient: tocilizumab
Inactive ingredients of Intravenous ACTEMRA: sucrose, polysorbate 80, disodium phosphate dodecahydrate, sodium dihydrogen phosphate dihydrate.
Inactive ingredients of Subcutaneous ACTEMRA: L-arginine, L-arginine hydrochloride, L-methionine, L-histidine, L-histidine hydrochloride monohydrate.