Doctor Q&A: What You Need to Know About Chronic Idiopathic Urticaria

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Dr. David Khan, Program Director, Allergy & Immunology Fellowship Program at University of Texas Southwestern Medical Center, answers questions about chronic idiopathic urticaria (CIU).

HealthCentral: Is there any new research related to chronic idiopathic urticaria (CIU)?

Dr. David Khan: While there haven’t been any changes in understanding what actually causes the disease, there have been some important breakthroughs in treatment. The biggest news in treatment in the last 20 years has been the introduction of Xolair (omalizumab) to the market. The medication was first approved for asthma, and then ended up being more effective than anyone could have imagined in treating chronic urticaria.

Xolair is currently the only medication approved by the FDA to treat CIU. This drug is an injectable medication and is indicated for patients who have failed to respond to traditional therapies.

HC: How long does a CIU breakout typically last?

Dr. Khan: The length of time a breakout lasts may vary from patient to patient, but in about half of my patients, it typically lasts less than a year. But, in some rare cases, in can last decades.

HC: How does CIU differ from person-to-person?

Dr. Khan: Some patients who have CIU may also experience swelling (angioedema). Other variations would be based mainly on the frequency of breakouts. Some patients may go long periods of time between breakouts, and others may suffer daily. Also, the amount of hives a person has varies.

Some people may have large areas of the body covered in welts, others may have small patches of smaller welts.

Some people may have known triggers that stimulate breakouts (referred to as physical urticaria). These triggers include cold, heat, pressure, or vibration.

HC: Is tracking breakouts helpful to patients and physicians?

Dr. Khan: Patients should pay attention to things that may make the hives worse. In most patients, tracking this could be an exercise in futility if there’s no known cause. However, keeping a log of how frequent the breakouts happen, as well as the severity of the breakouts, could be helpful for doctors to assess the patient and determine in intensity of their treatment.

HC: How do you help put patients struggling with CIU more at ease?

Dr. Khan: Patients become very frustrated with the thought that no one else has this disease. Many patients think that they are the worst patient the doctor has ever seen and don’t realize many others suffer with the condition. Everyone knows about allergic hives, but not many people—including physicians—are very familiar with the chronic condition. Many friends and family often try to give advice and guidance related to the acute condition, which often becomes frustrating to the patient who has already been down that road and has a completely different disease.

Patients also get frustrated when the physician can’t tell them what’s causing the hives, and so they think they’re going to have this condition forever, and some people even fear that the hives are life threatening, which they are not.

The key things I tell patients is that we’ll try to find a cause, and at some point this will go away. I tell them that we will get this under control and you will get your quality of life back. Having a sense that they can get their life back is reassuring to a lot of patients.

HC: Are there any side effects to any of the common treatments used?

Dr. Khan: Corticosteroids are the treatment with the most side effects, and unfortunately they tend to be the most commonly used. Physicians commonly use corticosteroids for many allergic conditions and it is effective in the short term. The problems start if it’s used chronically. These medications can cause serious long-term damage to the body, including severe weight gain, diabetes, cataracts, and osteoporosis. They should be avoided as much as possible for daily use.

Newer generation antihistamines are generally safe medications, but older antihistamines carry the risk of sedation. The newest drug, Xolair, has the potential side effect of an allergic reaction, so it has to be administered at a physician’s office or infusion center.

HC: How long does it take for a patient to find a treatment that works?

Dr. Khan: Some patients may be able to find the right antihistamine combination right away, but for most people who require a more aggressive treatment, it could take months or rarely even years to find a treatment that works since we have to work through the treatment guidelines set for this condition.

HC: What’s the most important piece of advice you would give to someone struggling with this condition?

Dr. Khan: One thing that’s unfortunately common is that many patients are treated with first-line medications that don’t work and then they stop there. People also get hung up on what the cause is, but at some point you have to accept that you don’t know what’s causing it and that further testing won’t be of any value. I hear from a lot of patients who think they’ve exhausted their treatment possibilities, but I tell them that there’s always something else that can be tried to help better control their disease.