Ilaris (Canakinumab) for Periodic Fever Syndromes

Ilaris (canakinumab) is a prescription medication approved by the U.S. Food and Drug Administration (FDA) to treat certain periodic fever syndromes in adults and children.

How Ilaris Works and How It’s Taken

Ilaris is a type of medication called an interleukin-1 (IL-1) beta-blocker. IL-1 beta is a protein in the body that can cause inflammation. Ilaris attaches to this protein and blocks its activity.

Periodic fever syndromes are rare autoinflammatory conditions. They can cause repeated episodes of fever and inflammation. Inflammation means parts of the body can become painful, swollen, warm, or irritated.

Doctors prescribe Ilaris when treating certain periodic fever syndromes, including:

Cryopyrin-associated periodic syndromes (CAPS) in adults and children ages 4 and older
Familial cold autoinflammatory syndrome (FCAS), which is a type of CAPS
Muckle-Wells syndrome (MWS), which is a type of CAPS
Tumor necrosis factor receptor associated periodic syndrome (TRAPS) in adults and children
Hyperimmunoglobulin D syndrome (HIDS), also called mevalonate kinase deficiency (MKD), in adults and children
Familial Mediterranean fever (FMF) in adults and children

Ilaris is given as an injection under the skin by a healthcare provider. How often it is given depends on the condition being treated.

Typical Dosing for Periodic Fever Syndromes

For CAPS, Ilaris is usually given once every eight weeks. The dose is based on body weight.

For adults and children with CAPS:

People who weigh more than 40 kilograms — The recommended dose is 150 milligrams every eight weeks
People who weigh 15 kilograms to 40 kilograms — The recommended dose is 2 milligrams per kilogram every eight weeks
Children who weigh 15 kilograms to 40 kilograms and do not have an adequate response — The dose can be increased to 3 milligrams per kilogram every eight weeks

For TRAPS, HIDS/MKD, and FMF, Ilaris is usually given once every four weeks. The dose is based on body weight.

For adults and children with TRAPS, HIDS/MKD, or FMF:

People who weigh more than 40 kilograms — The recommended starting dose is 150 milligrams every four weeks. The dose can be increased to 300 milligrams every four weeks if the response is not adequate.
People who weigh 40 kilograms or less — The recommended starting dose is 2 milligrams per kilogram every four weeks. The dose can be increased to 4 milligrams per kilogram every four weeks if the response is not adequate.

This information is based on the prescribing information, but your healthcare provider may tailor your treatment plan. Always follow their guidance.

Ilaris Side Effects

In clinical studies of Ilaris for periodic fever syndromes, the most common side effects occurred in at least 10 percent of people.

For CAPS, common side effects included:

Nasopharyngitis (cold-like symptoms, such as a sore throat or stuffy nose)
Diarrhea
Influenza
Rhinitis (swelling in the nose)
Nausea
Headache
Bronchitis (swelling in the lung airways)
Gastroenteritis (swelling in the stomach and intestines)
Pharyngitis (swelling in the throat)
Weight gain
Muscle and bone pain
Vertigo (spinning feeling)

For TRAPS, HIDS/MKD, and FMF, common side effects included:

Injection-site reactions
Nasopharyngitis (cold-like symptoms, such as a sore throat or stuffy nose)

Serious Side Effects and Warnings

Ilaris can cause serious side effects that may require immediate medical attention. These include:

Serious infections — Ilaris can lower your immune system’s ability to fight infections, including unusual or opportunistic infections such as tuberculosis (TB).
Immunosuppression — Decreased immune function can occur. The effect of IL-1 blocking therapy on cancer risk is not known, but immunosuppressive medicines may increase risk.
Hypersensitivity reactions, including Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS) — This serious allergic-type reaction can include a severe rash and symptoms affecting the whole body.

Get medical help right away if you think you are having a serious reaction.

How To Save on Ilaris

Novartis Pharmaceuticals, the manufacturer of Ilaris, offers the ILARIS Companion program. Eligible individuals with commercial insurance may pay as little as $30 per month for their prescription.

The ILARIS Companion program also provides support with benefits investigations, insurance coverage review, prior authorization, appeals, specialty pharmacy coordination, product delivery, and home health nursing services.

To learn more, visit the ILARIS savings and support page or call 866-972-8315.

What To Know Before Taking Ilaris

Before starting Ilaris, your doctor will test you for active and latent (hidden) TB. Your doctor will also check you for signs of infection.

Before starting Ilaris, you should be up to date on recommended vaccines, if possible. This includes the pneumococcal vaccine and the inactivated flu vaccine. You should not receive live vaccines while taking Ilaris.

Tell your doctor if you have any allergies to Ilaris or any ingredients in Ilaris.

Tell your doctor about all medicines you take, including prescription drugs, over-the-counter medicines, vitamins, and herbal supplements.

Especially tell your healthcare provider if you take:

Medicines that affect your immune system
IL-1 blocking medicines, such as Kineret (anakinra) or Arcalyst (rilonacept)
TNF inhibitors, such as Enbrel (etanercept), Humira (adalimumab), Remicade (infliximab), Simponi (golimumab), or Cimzia (certolizumab pegol)
Medicines that affect enzyme metabolism

Before starting Ilaris, tell your healthcare provider about all your medical conditions, including if you:

Think you have or are being treated for an active infection
Have symptoms of an infection
Have infections that keep coming back
Have a history of low white blood cells
Have or have had HIV, hepatitis B, or hepatitis C
Have recently received a vaccine or are scheduled to receive one

If you are pregnant, planning to become pregnant, or breastfeeding while taking Ilaris, talk with your doctor about the risks and benefits.

Tell your healthcare provider right away if you become pregnant while receiving Ilaris.

If you received Ilaris while pregnant, tell your baby’s healthcare provider before your baby gets any vaccines. This is important for four to 12 months after your last dose of Ilaris before giving birth.

Community FAQs

These answers are fact-checked by our editorial staff.

How effective is Ilaris for periodic fever syndromes?

Ilaris was shown to help people with certain periodic fever syndromes.

In a CAPS study, 97 percent of people had a complete response by week 8. A complete response meant their disease activity and skin symptoms were minimal or gone, and certain inflammation markers were low.

In another study, Ilaris helped more people with TRAPS, HIDS/MKD, and FMF than placebo (an inactive treatment). People were counted as complete responders if their first flare improved by day 15 and they did not have a new flare through week 16.

Complete response happened in:

45.5 percent of people with TRAPS who took Ilaris, compared with 8.3 percent who took placebo
35.1 percent of people with HIDS/MKD who took Ilaris, compared with 5.7 percent who took placebo
61.3 percent of people with FMF who took Ilaris, compared with 6.3 percent who took placebo

How long does Ilaris take to work for periodic fever syndromes?

How fast Ilaris works can depend on the condition being treated.

In a CAPS study, some people had a complete response as early as one week after starting Ilaris. By week 8, 97 percent of people had a complete response. Inflammation markers called C-reactive protein (CRP) and serum amyloid A (SAA) returned to normal within eight days in most people.

In a study of TRAPS, HIDS/MKD, and FMF, some people had their first flare improve by day 15. Ilaris also helped more people avoid a new flare through week 16 compared with placebo.

Your results may be different. Talk with your healthcare provider about what to expect with Ilaris.