Chronic idiopathic urticaria: Living with itchy hives that never go away

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The memories are so vivid for Kayla Creighton. She remembers as a young girl that her parents would take “night shifts” and place ice packs all over her body as she lay like a starfish in bed.

Her body was covered in red, itchy hives. It would burn, it would hurt, it would keep her awake all night.”I literally couldn’t put clothes on. I was that sensitive,” Creighton says.

The thing is, it wasn’t an allergic reaction. The 21-year-old from Pictou County, N.S., suffers from chronic idiopathic urticaria (CIU). The hives will come and go, but it’s always unpredictable. Sometimes they would last for a day, other times they would last for years.

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“It’s very hard to work this into your life. It’s very isolating and debilitating.”

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She says it wasn’t easy for her growing up. Simple things, like going to school and socializing, felt like a treacherous mountain she couldn’t climb. Even when she tried, the itching was so bad, she couldn’t get a grip. She would miss elementary school for months at a time and she had to be taken out of university.

It took several years to diagnose the skin condition. She tried everything. She eliminated foods from her diet, she phased out soaps and creams from her routine, and she tried to change her environment. But to no avail. The hives were chronic.

Understanding CIU

The common misconception with CIU is that the hives are triggered by an allergy, says Dr. Gordon Sussman, an allergist and immunologist practising in Toronto.

Instead, it is believed that the hives are triggered by a malfunction of the immune system. Your immune system is there to protect you from pathogens or viruses so you don’t get sick.  It releases antibodies in your blood, which attack any foreign substances.

But with CIU, what is happening is that the antibodies are confused and are randomly triggering the release of histamine, which causes the skin to swell, Sussman says. Hence the confusion with an allergy.

For example, when you react to an allergy to pollen, your body also releases histamine, which is treated with anti-histamines like over-the-counter Benadryl. But for people suffering from CIU, most over-the-counter medicines won’t work, Sussman says.

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Instead, treatment needs to be much more targeted. The difficult part is getting diagnosed. Once you figure out what you have, Sussman says CIU can often be controlled. About half of CIU cases last up to one year.

Diagnosing and treatment

Often patients are prescribed non-sedating anti-histamines that are four times stronger than the over-the-counter dose, and this is effective for 50 per cent of patients, Sussman says. The medication also has to be taken regularly during a hive attack, because the outbreaks are so unpredictable.

There is also a prescribed medication called omalizumab, which neutralizes antibodies so they don’t release histamine.

If you believe you have CIU, Sussman recommends seeing a specialist who understands urticaria, such as an allergist or an immunologist. The condition itself can be debilitating and can often go diagnosed for years.

The “chronic” in CIU means that symptoms last six weeks or more.

“Idiopathic” means that there is no explanation for what’s causing the hives, and that the hives can appear spontaneously.

And “urticaria” is the medical term for a group of hives. Urticaria are red, itchy bumps or welts on the skin.

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Hives most often appear on the face and the hands and feet, but they can appear anywhere, including inside the throat, which can cause difficulty breathing. The hives can also come and go and can be extremely itchy and painful.

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Typically, about half the cases of CIU are seen in 20 to 40 year olds, but the condition can occur at any age. It also affects women more than men.

Moving forward with CIU

Creighton has managed to be hive free for the last two years, but she fought with CIU and its unpredictability for more than a decade. There is no cure of CIU.

“I was in and out of hospitals in an emergency state for years. It was exhausting. Although I am better physically now, emotionally it’s been very difficult,” Creighton says.

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During a period of her life, she was put on steroids to help with the CIU. It caused her to become obese. For four months, she suffered from anorexia and fell into a deep depression. But she says she’s trying not to let the condition define her.

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She’s now gone back to university and has become an advocate for CIU awareness.

She also hopes the general public will be more tolerant of people who suffer from CIU. She says she was often stigmatized for the way she looked. She wants to remind people that CIU is not contagious.

“Be understanding of people who are on the pathway of diagnosing the symptoms that they are having.”

And her message to those who think they might have CIU is to stay strong and to seek medical advice. It’s trial and error when it comes to finding treatment, she says.

“You’re going to run into people who may not believe you or may not understand, but trust your instinct,” she says.