Vicki Lawrence

Facts on Chronic Idiopathic Urticaria, a Form of Chronic Hives

Chronic idiopathic urticaria (CIU) can look and feel different for everyone, but there are three things that all CIU symptoms have in common:

  • Chronic

    The “chronic” in CIU means that symptoms last six weeks or more. CIU is an unpredictable form of chronic hives that can appear at any time with no identifiable cause. These hives may not go away for many months—or even years. CIU can be difficult to diagnose.

  • Idiopathic

    This means there is no explanation for what’s causing it. This can be difficult for some people to accept when they receive the CIU diagnosis from their doctor. Because these chronic hives symptoms come and go without a known cause, many who have been diagnosed with CIU continue to look for possible triggers for their disease. This can turn into a cycle of elimination diets, changing of detergents and other changes in addition to tests for allergies – none of which prove to be the cause of these patients’ hives.

  • Urticaria

    Pronounced “ur-ti-kair-ee-uh,” this is the medical term for hives. Urticaria appear as red, itchy bumps or welts on the skin that can appear anywhere on the body. A red hive will turn pale when pressed in the center, which is called “blanching.” For every 10 people whose hives are chronic, at least seven of them have CIU.

If you are experiencing hives, don’t know the cause and they have lasted at least six weeks or more, talk to a specialist to see if you have chronic idiopathic urticaria. There may be medicines they can prescribe to help you manage your condition.

If you have already been diagnosed with CIU, know that you are not alone. In the U.S., around 1.5 million people suffer from this form of chronic hives. Women are twice as likely to get CIU, and most cases appear between the ages of 20 and 40.

If you have CIU, you should speak with a specialist. Sharing your experience and providing details on your symptoms to your doctor might make a difference in how your condition is managed.

CIU & You is an educational program focused on supporting the specific needs of people suffering with chronic idiopathic urticaria. Developed in partnership with the Asthma and Allergy Foundation of America (AAFA), and made possible by Novartis Pharmaceuticals Corporation and Genentech, CIU & You aims to educate patients and encourage patients to better communicate their symptoms to their healthcare provider.

If you are experiencing CIU, a specialist may ask you to recount symptoms during the course of an extended period to help confirm your diagnosis. While not life-threatening, CIU can cause severe itch and visible hives. During doctor visits, you can also be asked to describe your CIU symptoms.

This program provides tools to help you share your personal story with your doctor to help manage your condition.

Image: Vicki Lawrence

CIU Is No Laughing Matter, Just Ask Vicki.

Vicki Lawrence – famous for her role on “The Carol Burnett Show” and “Mama’s Family” and more recently on “Hannah Montana” – is turning the spotlight to CIU.

Vicki Lawrence is no stranger to being quick on her feet and playing off improv lines on stage. But when she was diagnosed with this form of chronic hives without a known cause, she was caught off-guard.

After the first outbreak of hives which were accompanied by an intense itch, Vicki tried to figure out the cause of her hives, with little success. “I was at my wit’s end. I didn’t know what I was going to do. I stopped drinking red wine, I changed soap, and I submerged my hands in bowls of ice water. I started avoiding things that I thought were causing the hives.

“My allergist tested me for everything but we still couldn’t figure out a cause for the hives. It was so frustrating to keep searching for a cause. And as much as I was seeking answers, I wasn’t getting any, and wasn’t getting any relief either. Weeks passed, but the hives didn’t. Friends and family offered suggestions and their own explanations but they didn’t understand what I was going through.

“I want to be open about my condition to show others that they are not alone in their struggle with this form of chronic hives.”

Who Can Treat CIU?

CIU can be hard to diagnose.

Specialists who focus on this form of chronic hives include:

  • Allergist: A specialist trained to diagnose, treat and manage allergies, asthma and immune system diseases that can affect different parts of the body.
  • Dermatologist: A doctor who specializes in diagnosing and treating medical conditions that affect the skin, hair and nails.

CIU & Your Personal Story.

It’s important that you talk to your doctor about your experience with CIU, sharing details about your symptoms. Think about your condition and write down what you are going through. In close partnership, you and your doctor can manage your disease together.

Not sure how to get the conversation started? We can help with that. Complete this Hives Conversation Starter with a Symptom Tracker before your next doctor appointment.

and take this guide with you to your doctor.

  • I've seen several healthcare providers about my condition and they've told me...
  • I first experienced hives...
  • Share when your latest hive flare occurred and the frequency with which you experience them...
  • Describe your average hive itch intensity (i.e., mild, moderate, severe)…
  • I have/have not had flares or other chronic episodes in the past…
  • When I describe my hives, I use these words (e.g., size and shape)…
  • Share recent photos of your hives for your doctor to better understand their flare, or waxing and waning nature
  • My hives appear on my body in these places...
  • I find the most relief from my CIU symptoms when I…
  • I have seen the following healthcare providers...
  • I have tried the following to treat my symptoms...
  • What treatment options are available to help manage my CIU symptoms?

If you have CIU and are uncontrolled on H1 antihistamine treatment, click below to learn about a treatment option.

For more figures and stats on CIU, see our infographic.

Curious what chronic hives can look like?

View our CIU gallery

About AAFA

Image: AAFA logo

The Asthma and Allergy Foundation of America (AAFA), a not-for-profit organization founded in 1953, is the leading patient organization for people with asthma and allergies, and the oldest asthma and allergy patient group in the world.

MISSION STATEMENT: AAFA is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research.

AAFA provides practical information, community based services and support to people through a network of Regional Chapters, Support Groups and other Local Partners around the U.S. AAFA develops health education, organizes state and national advocacy efforts and funds research to find better treatments and cures.

In addition, the mission of AAFA's Web site is to provide online access to AAFA's reliable, validated asthma and allergy information and tools to families, patients, parents, healthcare providers, policymakers and others.

For more than 60 years, AAFA has been a leader in fiscal responsibility and charity management. AAFA is a member of the most respected nonprofit industry groups and subscribes to the highest ethical standards.