Caring for a child with Systemic Juvenile Idiopathic Arthritis (SJIA) can be complicated and challenging. Here are some helpful resources for you:
In addition to ILARIS Support, there are a number of foundations and organizations dedicated to helping people with SJIA and other challenging diseases and conditions. These organizations include:
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ILARIS® (canakinumab) is a prescription medicine injected by your healthcare provider just below the skin (subcutaneous) used to treat:
IMPORTANT SAFETY INFORMATION
ILARIS can cause serious side effects, including increased risk of serious infections. ILARIS can lower the ability of your immune system to fight infections. Your healthcare provider should:
Tell your healthcare provider right away if you have any symptoms of an infection such as fever, sweats or chills, cough, flu-like symptoms, weight loss, shortness of breath, blood in your phlegm, sores on your body, warm or painful areas on your body, diarrhea or stomach pain, or feeling very tired.
You should not receive ILARIS if you are allergic to canakinumab or any of the ingredients in ILARIS.
Before receiving ILARIS, tell your healthcare provider about all your medical conditions, including if you:
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Especially tell your healthcare provider if you take:
Ask your healthcare provider if you are not sure.
ILARIS can cause serious side effects including:
The most common side effects of ILARIS when used for the treatment of CAPS include: cold symptoms, diarrhea, flu (influenza), runny nose, headache, cough, body aches, nausea, vomiting, and diarrhea (gastroenteritis), feeling like you are spinning (vertigo), weight gain, injection site reactions (such as redness, swelling, warmth, or itching), and nausea.
The most common side effects of ILARIS when used for the treatment of TRAPS, HIDS/MKD, and FMF: cold symptoms, upper respiratory tract infection, runny nose, sore throat, nausea, vomiting, and diarrhea (gastroenteritis), and injection site reactions (such as redness, swelling, warmth, or itching)
The most common side effects of ILARIS when used for the treatment of SJIA include: cold symptoms, upper respiratory tract infection, pneumonia, runny nose, sore throat, urinary tract infection, nausea, vomiting and diarrhea (gastroenteritis), stomach pain, and injection site reactions (such as redness, swelling, warmth, or itching)
Tell your healthcare provider about any side effect that bothers you or does not go away.
What is Macrophage Activation Syndrome (MAS)?
MAS is a syndrome associated with SJIA and some other auto-inflammatory diseases like HIDS/MKD that can lead to death. Tell your healthcare provider right away if your SJIA symptoms get worse or if you have any of these symptoms of an infection:
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
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Symptoms: a description of the way you are feeling due to an illness.
Arthritis: inflammation of one or more joints, which can cause pain, swelling, stiffness, and loss of motion.
Inflammation: the body's protective response that results in heat, pain, redness, and swelling.
Juvenile Arthritis (JA): a medical condition that occurs in children before age 16 and involves swelling in one or more joints lasting at least 6 weeks.
Systemic Juvenile Idiopathic Arthritis (SJIA): a type of arthritis that has no apparent cause and affects children aged 16 years and younger. Like other forms of juvenile idiopathic arthritis, SJIA involves swelling in one or more joints lasting at least 6 weeks. However, SJIA affects the whole body, beyond the joints. It is characterized by spiking fevers that come and go and a pink or salmon-colored rash, both of which may precede swollen joints.
Idiopathic: the exact cause of the disease is unknown.
Autoinflammatory disease: an illness in which the body's control of inflammation is not functioning properly, leading to uncontrolled inflammation.
Pediatric rheumatologist: a doctor who specializes in diagnosing and treating bone and joint disorders in children and teenagers.
Systemic: affecting the entire body, rather than a single organ or body part.
Flare: the worsening and increase in severity of disease symptoms.
Biologic: a product made from living cells that is used to treat diseases. Biologics are genetically engineered proteins derived from human genes.
Cytokine: a protein produced by the body that interacts with the cells of the immune system to help fight infection. When the body produces too many cytokines, it can cause inflammation and tissue destruction.
Injection: usually referred to as "a shot," an injection puts medication into the body using a syringe.
Cryopyrin-Associated Periodic Syndromes: a group of rare and genetic diseases that includes Familial Cold Autoinflammatory Syndrome (FCAS) and Muckle-Wells Syndrome (MWS).
Genetic: of or relating to the genes or heredity, meaning it can be passed down in families.
Disease: a condition of a body part, organ, or system that occurs due to genetics, infection, or the environment and that typically presents with a specific group of symptoms.
Familial Cold Autoinflammatory Syndrome: an autoinflammatory disease in a group of rare diseases called Cryopyrin-Associated Periodic Syndromes (CAPS). It is also known as FCAS.
Inflammation: the body's way of protecting itself against infection or injury. When someone has the condition called Cryopyrin-Associated Periodic Syndromes (CAPS), inflammation occurs without infection or injury.
IL-1β: a protein that the immune system produces to fight disease with inflammation. The production of too much IL-1▀ is harmful to the body. IL-1β is also called interleukin-1 beta.
Immune system: the body's natural defense system that protects against any material foreign to the body.
Muckle-Wells Syndrome: an autoinflammatory disease in a group of rare diseases called Cryopyrin-Associated Periodic Syndromes (CAPS). It is also known as MWS.
Rare disease: an uncommon illness that affects very few people.
Conjunctivitis: Also called pink eye, conjunctivitis is redness and inflammation of the whites of the eyes and eyelids. There are many causes of conjunctivitis, including Familial Cold Autoinflammatory Syndrome and Muckle-Wells Syndrome.