My Experience with Xolair

As I've written about, I was diagnosed with chronic hives in 2021. My journey up to that point involved a smattering of hives through my teens and twenties, then an increasing number of localized hives and occasional full-body breakouts in my thirties.

Health complications in my hives journey

As I neared 40 years old, COVID-19 entered the picture. When I was sick with COVID-19 in 2020, my body went haywire. From mid-2020 into the beginning of 2021, my mast cells and immune responses were completely uncontrolled and out of whack.

By spring 2021, I was experiencing hives on a near-daily basis. I was in the hospital for nearly a month, as all my symptoms had spiraled into an untenable situation.

Severe allergic reactions and hives

During my hospitalization, I began taking a slew of medications to combat the allergic responses that were sending me into recurring bouts of anaphylaxis. With the allergic reactions came hives.

When I had eaten nothing and done nothing and just existed that day, the hives continued to show up. One of my specialists mentioned she wanted me to start Xolair but wasn't sure if it would be approved. My then-allergist then attempted to get approval but didn't follow through with an appeal when insurance initially denied it.

In the fall of 2021, I was hospitalized again for a central line infection. During that stay, I was referred to a dermatologist. I followed up with that referral and was subsequently diagnosed with chronic hives.

Starting on Xolair injections

Around this same time, I switched to a different allergist. When I saw him for my first visit, his first agenda item was Xolair. I was all for it, as we had another diagnosis to bolster the application to my insurance company. Within a week of sending in all the necessary documentation, my allergist heard a reply—the Xolair was approved!

Preparing for the first injection

My first injection of Xolair was scheduled for January 2022. Due to the warnings about anaphylaxis risk, I was a messy combination of nervous, excited, and a bit afraid. Since I also have frequent idiopathic anaphylaxis (due to mast cell activation syndrome), I was especially concerned about my body's ability to handle this injection safely.

My allergist assured me I would be monitored for about an hour after my first injection. As before, I asked if I should pre-medicate with Benadryl with other treatments. They told me to proceed with pre-medication, as it wouldn't hurt and might help.

Xolair injections and their sting

For my first injection, I had my EpiPens ready. My allergist also had epinephrine on hand, which gave me peace of mind. Although I was warned that the injections were uncomfortable, I wasn't quite prepared for how much they stung! I've gotten biologic injections for some other conditions, which have been more bearable. I'm still not used to the sting, being a year and a half into getting Xolair injections.

I've dealt with central lines and weekly port access, daily heparin and Lovenox injections, and weekly blood tests, but Xolair injections are in their own category of spicy. I wouldn't say they hurt, and they're not even close to unbearable. They're just...special.

I always take a second to "psych myself up" as the nurse preps the injections, then I take a deep breath and slowly let it out as they slowly push in the plunger. I've learned to lean into the discomfort, knowing it will only last briefly.

The impact of new treatment on chronic hives

So, 18 months later, where am I with my chronic hives? I rarely have them at this point. I've had a few flare-ups with it being so hot and sticky in the last month. I had a handful show up when I got bit by a spider a few weeks ago.

But aside from the occasional breakthrough allergic response, or if I get too hot and sweaty, I am hive-free. I am thankful to have one less "thing" to contend with. The only issue my allergist and I are currently dealing with is health insurance. I am now on the maximum dose of Xolair and get my injections every 2 weeks.

Still dealing with insurance coverage issues

As of this month, my insurance is denying coverage for this dose. The denial maybe because I've started an additional biologic medication for my severe asthma, and a third was added to my treatment plan earlier this year for osteoporosis. All of these are necessary in my situation, but insurance doesn't see it that way. They see the price tag, which I understand.

Thankfully, my allergist's office is on top of things and has already appealed the decision with the appropriate documentation. We're all hopeful it will work out, but still keeping our fingers crossed as we await their decision. Please keep your fingers crossed for me!