Answers to Your Questions About HIDS/MKD and ILARIS

Answers to Your Questions About HIDS/MKD and ILARIS

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What is Hyperimmunoglobulin D Syndrome / Mevalonate Kinase Deficiency (HIDS/MKD)?

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HIDS/MKD is an inherited, rare, and serious condition belonging to a group of diseases called Periodic Fever Syndromes. Like other types of Periodic Fevers, HIDS/MKD is an autoinflammatory condition that can cause attacks or flares, which result in symptoms including fevers, rash, pain, inflammation, swollen lymph nodes, and canker sores (aphthous ulcers).

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What causes HIDS/MKD?

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HIDS/MKD is an inherited disease that is caused by a genetic mutation in the MVK (mevalonate kinase) gene, which can lead to inflammation and other HIDS/MKD symptoms.

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How long will my child have HIDS/MKD?

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There is no cure for HIDS/MKD, but with continuous treatment, children with HIDS/MKD 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 characterized by a range of symptoms, including but not limited to recurrent fevers, rash, pain, and joint inflammation. Periodic Fevers are typically inherited from other family members, but can occur on their own. Periodic Fevers can affect both children and adults, though symptoms usually begin during childhood.

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Is HIDS/MKD contagious?

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HIDS/MKD is not contagious. It's an inherited disease, which means that it can be passed down from other family members, although the disease can occur on its own. Certain factors are thought to trigger HIDS/MKD flares, including travel, stress, immunizations, and intense physical activity.

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What will happen to my child with HIDS/MKD?

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HIDS/MKD can vary from child to child. In some patients, the symptoms of HIDS/MKD diminish with age. You should keep track of your child's HIDS/MKD symptoms, and be sure to know about possible disease triggers. Learn about HIDS/MKD treatment options.

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What is ILARIS?

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ILARIS® is a prescription medication that is FDA approved to treat HIDS/MKD. ILARIS works by attaching to and blocking interleukin-1 beta (IL-1β), a type of cytokine responsible for inflammation. ILARIS is given once a month as a subcutaneous injection right below the skin.

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How can ILARIS help with HIDS/MKD?

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ILARIS helps provide fast and sustained relief from HIDS/MKD. In a study of 37 patients with HIDS/MKD, 35.1% had minimal to no disease activity at day 15 through week 16. Study participants were assessed and given a single physician score based on several signs and symptoms, including: swollen lymph nodes (lymphadenopathy), canker sores (aphthous ulcers), and abdominal 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, once a 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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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 HIDS/MKD 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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