Facts About CAPS (Cryopyrin-Associated Periodic Syndrome)

CAPS–A Rare, Lifelong Disease

CAPS (Cryopyrin-Associated Periodic Syndrome) is a group of rare, genetic diseases that include FCAS (Familial Cold Autoinflammatory Syndrome) and Muckle-Wells Syndrome (MWS).

Although there may be only about 300 patients with CAPS in the United States, experts believe that not all patients with CAPS have been diagnosed yet because of poor disease recognition.

• Symptoms of CAPS may resemble other conditions: however in CAPS, symptoms are chronic in nature (keep coming back)

CAPS Is Inherited, It Is Not the Result of Anything You Did Wrong

People suffering from CAPS (Cryopyrin-Associated Periodic Syndrome) usually get the condition due to an inherited, mutated gene. This gene may lead to uncontrolled inflammation in the body.

• IL-1β, also known as interleukin-1 beta, is a protein that is part of the body's immune system
• Buildup of IL-1β in body tissues is what causes the inflammation and symptoms of CAPS:
  • Rash
  • Fever or chills
  • Headache or migraine
  • Fatigue
  • Muscle or joint pain
• Symptoms may occur:
  • After exposure to cool air or a drop in temperature
  • For no known reason

How Are FCAS and MWS Different?

MWS is more severe than FCAS.

• Symptoms of MWS may be more severe and occur more often than in FCAS
• Symptoms may also not last as long in FCAS as they do in MWS

If you suffer from CAPS (Cryopyrin-Associated Periodic Syndrome), or if you are a caregiver or a loved one of someone with CAPS, use this online resource to learn more helpful facts about CAPS:

• About FCAS
• About Muckle-Wells Syndrome
• What Causes CAPS
• Symptoms of CAPS
• Managing Symptoms

Other Helpful Tools

Only a physician can determine whether you or your loved one has CAPS (Cryopyrin-Associated Periodic Syndrome), so be sure to discuss all symptoms with your doctor.

• Download the Talking to Your Doctor Discussion Guide for a few simple suggestions to start a conversation with your doctor about CAPS

Since CAPS (Cryopyrin-Associated Periodic Syndrome) is a genetic disease, the Speaking With Family About CAPS Letter may be helpful for caregivers or patients who would like to let family members know about CAPS and their potential risk for the disease.

If you do not suffer from CAPS (Cryopyrin-Associated Periodic Syndrome) but you know or care for someone who does, visit the section For Parents and Other Caregivers to learn what you can do to help.

If you have questions about CAPS and how ILARIS^® can help, ask your doctor or call 1-877-ILARIS1 (1-877-452-7471).