Answers to Your Questions About CAPS and ILARIS

Answers to Your Questions About CAPS and ILARIS

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What are Cryopyrin-Associated Periodic Syndromes (CAPS)?

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CAPS are a group of rare and genetic diseases that includes Familial Cold Autoinflammatory Syndrome (FCAS) and Muckle-Wells Syndrome (MWS). CAPS are rare and chronic diseases that are part of a larger group of diseases known as Periodic Fever Syndromes.

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What causes CAPS?

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CAPS are inherited conditions that are generally passed on from other family members. CAPS are caused by an inherited mutated gene, called the NLRP3 gene (or the CIAS1 gene). In some cases, however, the genetic mutation responsible for CAPS may occur spontaneously at birth.

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How long will my child have CAPS?

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There is no cure for CAPS, but with continuous treatment, children with CAPS may experience symptom improvement.

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What are Periodic Fever Syndromes?

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Periodic Fever Syndromes are a group of rare, autoinflammatory diseases that are characterized by symptoms including recurrent fevers, rash, pain, and joint inflammation. Periodic Fevers are typically inherited from other family members, but can occur on their own. Both children and adults can be affected by Periodic Fevers, though symptoms usually begin during childhood.

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Are CAPS contagious?

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CAPS are not contagious. They're a group of inherited diseases that can be passed down from other family members, though they can also occur on their own. Certain factors are thought to trigger CAPS flares, including exposure to cold, drops in temperature, stress, and exercise.

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What is ILARIS?

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ILARIS® is a prescription medication that is FDA approved to treat CAPS in patients 4 years and older. ILARIS works by attaching to and blocking interleukin-1 beta (IL-1β), a type of cytokine responsible for inflammation. ILARIS is given every 8 weeks as a subcutaneous injection right below the skin.

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How can ILARIS help with CAPS?

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ILARIS specifically addresses inflammation caused by IL-1β that can lead to CAPS symptoms such as rash, joint and/or muscle pain, and eye irritation. ILARIS can also decrease the risk of flares, or the worsening of CAPS symptoms. ILARIS is given by a doctor or nurse as an injection right below the skin. Talk to your doctor to find out if ILARIS may be a treatment option for you or your child.

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How fast does ILARIS work?

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Seven days after just 1 dose of ILARIS, the majority of patients (71%) experienced a complete response* to treatment. 97% of patients experienced improvement in their CAPS symptoms within the first treatment period (8 weeks).

*In a clinical study of 35 patients, 97% had a complete response within the first treatment period (8 weeks). The majority of patients (71%) experienced a complete response to treatment in 7 days.

Complete response was measured by laboratory results and a doctor's evaluation of the patient's skin disease and symptoms being minimal or better, including symptoms such as: rash, fatigue, muscle pain, headache or migraine, sore or red eyes, and joint pain.

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Is ILARIS given intravenously?

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ILARIS is not given as an intravenous infusion (infused inside a vein over a period of time). Instead, it is given as a subcutaneous (right under the skin) injection, or shot, every other month by a doctor or nurse. A home health nurse can be sent to your home to administer ILARIS to your child. If you are eligible, this service and other ILARIS support opportunities may be available for your child.

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How often will my child receive ILARIS?

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ILARIS is given as a subcutaneous injection (right under the skin) by a doctor or nurse once every 8 weeks—just 6 or 7 treatments in a year.

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Is support available to help us pay for ILARIS?

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We're committed to helping you get access to ILARIS. Our representatives work with you and your child's doctor to help you get started, including:

  • Contacting your insurance company

  • Verifying insurance benefits and investigation of coverage

  • Addressing coverage issues

  • Assisting with prior authorization and appeals, if needed

  • Providing co-pay* assistance for eligible patients with commercial insurance

  • Providing information about alternative assistance options for uninsured patients

*Limitations apply. Please contact the ILARIS Support Program at 866-972-8315 for more information.

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Who can I speak to if I have more questions about ILARIS?

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Talk to your child's pediatric rheumatologist or other healthcare professional. Your child's active CAPS treatment team can consist of many important members. Make sure that you find a doctor that you and your child are both comfortable with.

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