Do I Still Have Hives?

Since I began treatment for chronic hives, I have seen many, many changes in my symptoms. When I was on standard allergy medications, I experienced little relief. During flares that coincided with more emergent-type symptoms (due to my other medical conditions), I was placed on short tapers of prednisone or methylprednisolone.

Experiencing changes in hives

I typically saw and felt a significant change in my hives during these periods, but as soon as I finished the taper, my symptoms returned. At times, it seemed like my hives would be even worse after a steroid taper as if my body was revolting against the lack in my system.

Starting Xolair treatment for chronic hives

About 18 months ago, I began treatment with Xolair. My allergist had me start at the lowest dose, and we've built up to the maximal dose, injected every 2 weeks. I began on Xolair to treat not only my chronic hives but also in hopes of stabilizing some of my symptoms from mast cell activation syndrome.

Noticing improvements in my hives

Since starting Xolair, I've, without a doubt, had significant improvements in my mast cell disorder, and my hives are rarely an issue. Each time I go to the allergist's office to get my injections, the nurse will ask, "Any issues with hives?"

I feel a bit silly, almost always answering, "Nope!"— as if I should, for some reason, be experiencing a different outcome. Though that's probably just because, for so long, I got used to not seeing improvements with a slew of medications.

Months of relief from symptoms and flares

These days, despite the occasional breakthrough hives, I go through my weeks and months without itching, bumps, redness, or swelling. I get hot; I shave my legs, and I wear tight pants. Now and then, my body throws a little hissy fit, and I get a wave of itchiness that goes down to my bones. Or I'll get a few hives just after that bit of stinging and swelling that you know only means 1 thing…

Do I still have chronic hives?

And I wonder: do I still have hives? Should I still include "chronic idiopathic urticaria" on my medical history and mention it to my new doctors? Is this still a disorder I can list when there are no outward visible symptoms most of the time?

The answer to all these questions is overwhelmingly YES!

Why you should report chronic hives in medical history

What it has taken to control my hives is honestly pretty significant. The medications I take are not something I will be stopping anytime soon (unless insurance decides to throw a monkey wrench in the system).

Chronic hives are a part of my complex medical ecosystem, and doctors definitely need to know that. Continued documentation of chronic idiopathic urticaria ensures insurance will continue to pay for the medications I need, including Xolair.

New doctors in my medical team need to know my current and past medical history to make informed decisions about my current and future care. Despite no longer seeing the physical evidence of chronic hives regularly, I know my experience is still valuable and valid. So is yours!

No matter the severity or frequency you experience chronic hives, you're a part of this place. You matter. Your experience is valid. We're glad you're here.