Chronic hives kept coming back.

english

As reported in Erica Limlinger

The hives first appeared shortly after my 20th birthday after using a self-service laundromat. When you wear freshly washed clothes, a welt has formed that perfectly marks the shape of your bra and underwear. I was shocked and itching so much that I called my mom, who thought I had used too much detergent or had an allergic reaction. He recommended antihistamines, which had no effect on the non-stop itching.

I called the insurance nurse helpline because I couldn’t sit up or tolerate my clothes touching the red, swollen area. After waiting for an hour for someone to see me, they cleared me to go to an urgent care facility. There, the doctor gave me a corticosteroid injection and prescribed corticosteroid pills to take over the next few days. He told me to continue taking my antihistamines and recommended that I never use that brand of detergent again. The intense burning sensation of the hives subsided, changed color to pink, and disappeared after about a week. This episode was a teachable experience and I thought it was over.

But that wasn’t the case. The hives came back. Each time, my healthcare provider and I assumed that an unknown allergen was causing these episodes. They gave me corticosteroids and antihistamines, and by the next week the hives were magically gone. I wasn’t concerned about any side effects from taking corticosteroids. It just needed to be effective when using corticosteroids.

I kept detailed records of what I ate and what I applied or used on my skin. I consulted with an allergist, but they couldn’t find the cause of my outbreak. When I was in my 20s to 40s, relapses were relatively short, but I had to put my life on hold for about a week while I was receiving treatment. The itching was so severe that I couldn’t concentrate on anything for long, and no cream, pill, or treatment provided sufficient relief. After I turned 40, my hives became more prolonged and did not go away quickly, even with corticosteroids or various antihistamines. By then, I desperately wanted to find relief because the relapse had been going on for over a week and was feeling unmanageable.

If you imagine that the swollen area is just a bunch of small, red, itchy bumps, like mosquito bites, you won’t understand the full extent of what I’m feeling. I developed hives, painful swellings that I couldn’t touch without irritating my body and making the itching worse. It felt like someone had shaved my skin with a razor and covered it with fleece. During a rash, even the slightest scratch of a fingernail on the skin would cause it to swell. He could write his name with hives on his skin, a phenomenon called dermographism.

In 2019, I had hives for several months, meaning my hives were “chronic.” As with short-lived attacks, it was nearly impossible to do routine or simple activities such as working, sitting, or bathing. I had hives every day, and I never knew when they would get worse or where the swelling and itchiness would occur. The painful itching was overwhelming and nothing could soothe it.

During the outbreak, I continued to record every detail of my life, trying to determine what might explain the onset, disappearance, worsening, or remission of the outbreak. I have not been able to identify any patterns, allergens or clues as to why this is happening. Even during my last outburst, I still couldn’t find any form of relief that worked.

There are many myths associated with chronic hives, one of which is that simply reducing stress will make the rash go away. Like many women with chronic illnesses, I often had medical staff tell me that if I stayed calm, I wouldn’t get sick. But my regular accounts of the circumstances surrounding my attacks revealed that they were not caused by my emotions. When people implied that I could control my body’s extreme physical reactions simply by reducing stress, I felt like they were minimizing what was happening to me.

CSU on the Christine Bridge

During the outbreak in the first week of 2019, I felt the worst pain I have ever experienced in my life, and after that the outbreak became completely unpredictable. The itching was so bad I couldn’t sit still. I was unable to sleep, work, socialize with friends or family, or perform basic activities. After a few days things improved, but the hives still appeared every day. At first it was weeks, then months.

I was recently diagnosed with an autoimmune disease called Graves-Wassedow disease. I wonder if it could have something to do with my hives. After some research and consultation with an immunologist, I learned about chronic urticaria (CU) or chronic hives. For most people who suffer from this condition, the cause is completely unknown and is called chronic spontaneous urticaria (CSU), but outbreaks are often linked to autoimmune problems.

He took corticosteroids and quadruple doses of antihistamines, but there was no long-term relief. I finally found an allergist and immunologist who knew that, despite popular misconceptions, CSU is rarely allergic. He knew what to do and gave me a lot of hope.

I continued taking antihistamines and began treatment, which required monthly injections into the back of each arm. By the third month I did not notice any improvement. I called a friend who is a pharmacologist and asked, “Do I have to keep holding on to this? Why can’t I just throw this away?”

A friend told me to contact a trusted colleague who is an expert in the field and continue my treatment, so I did. Almost like clockwork, by six months the hives were completely gone. Today, I almost cry when I think about it. It was such an incredible relief.

It hasn’t happened again since then. I had a solitary rash, but haven’t had any since.

I had no intention of becoming someone who raised awareness about chronic hives, but I worked for a global patient awareness organization that included UC in its work. When I told the CEO that UC had been relaxed, great cooperation ensued. Together with two other dedicated colleagues, we founded We CU, an organization to provide help to people living with chronic hives in the United States.

The name says it all. If you have UC, we see. Meeting people in similar situations and giving them hope that they can find comfort is a gift. I know the frustration of feeling desperate and thinking nothing will work. I am so grateful that the itching, pain, and swelling are gone, and I am glad to have genuine, ongoing support from a community with UC where we can talk about our struggles, our successes, and most of all, our hopes.

characteristic

Our CU

This material was created with support from . Regeneron and Sanofi.

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