My Journey with Chronic Hives
Last updated: January 2023
In the spring of 2020, as our world abruptly shifted to carry the weight of a pandemic, my body was also shifting. After getting sick with a presumed case of Covid (this was prior to widespread testing), my health started on a downward spiral that continues to this day. As 2020 slogged on, I noticed some subtle and not-so-subtle changes in my physical body. Some issues were concerning and needed immediate intervention (hello, gallbladder removal and pancreatitis!). Other symptoms were simply bothersome, but added to the general chaos that seemed to be spreading in my body.
A range of changes and symptoms
One of those changes was the slow emergence of seemingly random episodes of itching, with raised red patches on my legs or chest. I’d experienced hives very occasionally in the past, but nothing like this. The itching was so intense, I would often bleed in an effort to reach deep under my skin where it felt like the itching started. Even though the occurrences didn’t seem to have a rhyme or reason, I began to notice an uptick in itching in the evenings, especially as I undressed from the day and my skin was exposed to cold air. Sometimes, it felt as if certain foods were triggering the itching, though this wasn’t always consistent.
Now, I am one who wants to know what’s going on in my body, and having a range of symptoms that were appearing at random and without apparent reason was driving me bonkers. Early in 2021, I began to experience what I now know to be anaphylaxis when eating certain foods. Each time I felt my throat go tight and my voice go hoarse, I also had the itchy, raised patches pop up all over my chest. As time went on, and I continued to experience other, more pressing symptoms, the hives were still showing up on a regular (usually daily) basis. Since they weren’t life-threatening, per se, my doctors just acknowledged them for what they were: a symptom.
Diagnosed with chronic hives
Fast forward to a hospital stay in the fall of 2021. I had just discontinued the use of TPN as my primary source of nutrition. I was re-incorporating various foods back into my diet, which was causing a major flare in my hives. I made sure to take photographs when I was experiencing a particularly devilish-looking outbreak, just in case a doctor ever needed further evidence of my plight. Those photographs came in handy when I was finally referred to a dermatologist. In October of 2021, I was finally diagnosed with chronic spontaneous urticaria, though the day of my appointment I ironically had zero hives (I had just finished a round of steroids). This is where all those photographs came in handy! Had I not been able to show proof of my issue, no diagnosis would have been made, and follow-up treatment would’ve continued to be delayed.
Patch testing and Xolair
In December 2021, I switched to an allergist that came highly recommended to me. In my first appointment, we scheduled patch testing and I was ultimately found to have some significant allergies. After a lengthy discussion of my past medical history and current medications (which was a long list, full of antihistamines that did little to control the hives), the decision was made to apply for Xolair injections. My previous allergist had attempted, but never submitted proper documentation, and never had the dermatologist’s diagnosis of chronic hives to support my application. Within one week of submitting an application to insurance, Xolair was approved and I received my first injection in January of 2022.
I’ve been getting Xolair injections for one year now, and even when my system is otherwise in a downward spiral, I rarely have any breakthrough hives. When I have experienced hives in the last year, it’s a sign to me that my body is struggling and I need to take better care. It’s also a reminder of how far I’ve come in my journey with chronic hives.
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