English
As Erica Rimlinger tells it
The hives first appeared shortly after his 20th birthday after he used a self-service laundromat. As I put on freshly washed clothes, welts formed, perfectly marking the shape of my bra and underwear. Shocked and extremely itchy, I called my mother, who suspected that I had used too much detergent while doing laundry or that I was having an allergic reaction. He recommended an antihistamine, but it had no effect on the itching that wouldn’t stop.
Unable to sit up or tolerate clothing touching my red, swollen welts, I called my insurance’s nurse hotline. After waiting an hour for someone to see me, they gave me permission to go to their emergency room. There a doctor injected me with a corticosteroid and prescribed corticosteroid tablets for me to take for the next few days. He told me to continue taking an antihistamine and recommended that I stop using that brand of detergent. The intense burning of the hives subsided and their color changed to pink, and then after about a week they disappeared. I thought this episode would be an experience from which I would learn something, and I was done.
But that wasn’t the case: the beehives appeared again. Each time, my doctors and I assumed that an unknown allergen was causing these episodes. They gave me a course of corticosteroids and antihistamines, and over the next week the hives disappeared as if by magic. I didn’t care about the side effects of taking corticosteroids: I just needed them to work when I took them.
I kept detailed records of what I ate and what I used on or near my skin. I consulted an allergist who couldn’t find the cause of the breakouts. When I was in my 20s and 40s, the bouts of illness were relatively short, but I had to put my life on hold for a week while I dealt with them. The itching was so severe that I couldn’t concentrate on anything for long, and no cream, pill or treatment provided sufficient relief. After age 40, hives episodes lasted longer and did not resolve quickly, even with corticosteroids or various antihistamines. By this point, the flare-ups had lasted for much longer than a week and felt uncontrollable, leaving me desperate for relief.
If you imagine that these welts were multiple small, red, itchy bumps like mosquito bites, you don’t understand the full extent of what I was feeling. My hives broke out in painful swellings that I couldn’t touch without irritating my body and making the itching even worse. It was as if someone had shaved my skin with a razor and covered me with wool. During my bouts of illness, a small nail scratch on my skin turned into a welt. I could write my name on my skin with hives, a phenomenon called dermographism.
In 2019, I experienced a month-long breakout of hives, meaning my hives were “chronic.” As with shorter outbreaks, it was almost impossible to work, sit, or perform normal or simple activities such as bathing. I had hives every day and didn’t know when it would be more severe or where the swelling and itching would occur. The painful itch was overwhelming and nothing could relieve it.
During the outbreaks, I continued to document every detail of my life, trying to identify a cause that could explain the onset, disappearance, worsening, or relief of the outbreaks. I couldn’t see any pattern, allergen or clue as to why this was happening. With my last attack I couldn’t find any effective relief either.
There are many myths associated with chronic hives and one is that simply reducing stress can eliminate breakouts. Like many women with chronic illnesses, I often had medical staff tell me that I wouldn’t get sick if I was calmer. But the records I regularly kept of the circumstances of my bouts of illness showed that they were not caused by my emotions. I felt like people were downplaying what was happening to me by suggesting that I could control my body’s extreme physical response simply by reducing stress, as if that was even possible.
CSU on Kristen’s legs
During the outbreak in the first week of 2019, I felt the worst pain I had ever experienced in my life, and then the outbreak became completely unpredictable. Because of the severe itching, I couldn’t sit still. It didn’t allow me to sleep, work, meet friends and family, or do basic activities. After a few days the situation improved, but the hives were still there every day: first for weeks, then for months.
A while ago I was diagnosed with an autoimmune disease called Graves’ disease. I was wondering if it might have something to do with my hives. After some research and consultation with my immunologist, I learned about chronic urticaria (CU) or chronic hives. In most people with this condition, the cause is never identified, which is why it is called chronic spontaneous urticaria (CSU). However, outbreaks are often linked to autoimmune problems.
He was taking corticosteroids and quadruple doses of antihistamines, which did not provide long-term relief. I finally found an allergist and immunologist who knows that, despite popular misconceptions, CSU is almost never an allergic reaction. He knew what to do and gave me a lot of hope.
I continued to take antihistamines and received a treatment that required an injection in the back of each arm every month. By the third month I hadn’t noticed any improvement. I called a friend who is a pharmacologist and asked him, “Do I always have to put up with this? Why can’t I get rid of this?”
My friend contacted a trusted colleague, an expert in the field, who told me to continue treatment, which I did. Almost like clockwork, by the sixth month the hives were completely gone. I almost cry when I think about it today. It was an incredible relief.
I haven’t had a breakout since. Although I had the occasional rash, I haven’t had a flare-up since.
I didn’t set out to become someone who raised awareness about chronic hives, but rather I worked for a global patient education organization that includes UCs in their work. When I told my CEO that I was in remission from ulcerative colitis, a great collaboration developed. Together with two other very dedicated colleagues, we founded an organization called We CU to help people in the US suffering from chronic hives.
The name says it all. If you have UC, see you. It is a gift to meet others with similar situations and provide hope that relief will be found. I know the frustration of being desperate and thinking that nothing will work. I’m incredibly grateful that my itching, pain, and swelling are gone, and I’m also glad that I’ve found real, lasting support in a community where we can talk to UC about our struggles, successes, and most importantly, our hope.
Features
We CU
This resource was created with support from Regeneron and Sanofi.
Are you a woman with real stories you would like to share? Let us know.
Our stories are authentic experiences of real women. The views, opinions and experiences expressed in these stories are not endorsed by HealthyWomen and do not necessarily reflect HealthyWomen’s official policies or positions.
From your website articles
Related articles on the Internet
