Chronic Hives: A Defining Journey
Last updated: March 2023
When one thinks of Christmas morning, you think of excitement, joy and wonder. But, for me, since 2021 the wonder I’ve felt has been one of mystery, tests, trials and tribulation. You see, on December 25, 2021 I noticed my first hive outbreak. Having never had hives before I assumed this was a reaction to something in my day to day. I did what any other individual might do—I retraced my steps, what I had eaten, if I had changed laundry detergent, etc.
I asked myself, “Are you stressed?”, like any one who hadn’t lived through the pandemic wasn’t. So I booked an appointment with my doctor. Little did I know that from that day forward, I would be over a year into one of the most lengthy, frustrating and uncomfortable journeys in my health that I could have imagined.
What is chronic hives?
I’d say I have been pretty lucky most of my life when it comes to my health. I was a former swimmer, ate healthy, had a stable lifestyle and never really struggled with any doctors visits or appointments. For that I am extremely grateful. There really is some meaning to the saying, “you don’t know what you don’t know”.
At my first doctor's appointment they explained to me what chronic hives or chronic urticaria was. They asked the same questions about food allergies, environment changes, pets, etc. And nothing was new. I was tested over and over again for lupus, celiac disease, allergies to specific items all racking up medical bill after bill with no real answer. Finally, when the hives were overtaking my body and I couldn’t see out of either eyes due to swelling, I went to the ER. That was the first visit of many.
Chronic hives and prednisone
They willfully prescribed Prednisone as a quick treatment. And man did that magic pill help solve the insufferable. But, the minute the dose was up, the hives were raging back. I kept returning over and over, referral after referral to allergists who just kept upping the dose of Prednisone to the point that I started to have “moon face” and swollen joints. After my own personal deep dive of research, I noticed that there was treatment from Xolair, a common medicine for those who suffer from CH. Although, the medicine itself was about $1400 a shot without insurance and even with, was most likely not covered.
The office suggested I work through the pharmaceutical company to be approved for the shots. This was a lengthy process, taking over six months to complete and in that time span I was working up to 40 mg of Prednisone a day. For those that don’t know, 40 mg of Prednisone a day will damage kidneys, break bones, and cause severe damage to the body. But it also does severe damage to your mental state, making you gain weight rapidly. By the time the Xolair was approved, I had gained almost 50 lbs from the medicine. Something I currently am still struggling to lose.
Switching up my hives treatment
In the midst of all of this, I made a major life change and moved back to the area I was from for a multitude of reasons, but most importantly more specialized medical care. The first allergist I saw was astounded that I was on such a dose of steroids and immediately put me on Xolair. It took almost six more months to wean off the steroid use so that I didn't go into adrenal shut down. I have been working for those six months on various Xolair shot dosages and still no relief.
I have changed my diet to gluten free even though I tested free of celiac disease. I am trying any anti-inflammatory diet that my body can handle. But the hives remain. I have had my thyroid sonograms, thyroid biopsied, and still lived in fear that it was a more serious condition all to hear that this CH lifestyle may not change for me. But, I won't give up. Because I don’t have a choice.
Living with flares and swelling
As a single woman, it makes it hard to date, hard to travel and honestly, hard to explain for the 10,000th time. You never know when you will have a flare up and your eyes swell. And you can make all the lip injection jokes you want, but it doesn’t make the burning and painful swelling go down. When you're up till two a.m. from scratching and wishing you could just lay in a tub of cortisone cream, it all feels very real.
In all of this, I have looked for a community of others that suffer from the same diagnosis. Because I don’t think this is a one size fits all auto-immune disease. I think CH is rapidly changing and morphing in different ways. Aligning itself with Hashimoto's, Addison's, and other auto-immune headliners. I read new side effects each time I see an article. Achy joints when I get out of bed that make me feel like I’m 85 in a 35 year old body. Extreme exhaustion to the point where you want to sleep but, you know you need to push yourself to do the bare minimum.
But, I won't give up. My life isn't over due to chronic hives, even though it may feel that way.
I know that CH doesn’t define anyone, but it definitely has defining moments in my life. I hope to learn more about this diagnosis and share solutions for with an ever-growing community.
How well do you feel you manage your chronic hives?