When Danielle Hand started getting red, itchy welts on her neck, her first thought was to call a dermatologist—an expert on all things skin-related. Hand, 41, of Greenlawn, NY, left her derm’s office with a topical steroid cream, but as the hives she treated disappeared, more would pop up in different spots. After six months of playing this game, she decided to try an allergist/immunologist, who referred her right back to the same dermatologist.
Hand’s story of musical doctors is a common one among the 500,000 people in the U.S. dealing with chronic hives, a.k.a., chronic idiopathic urticaria (CIU) or chronic spontaneous urticaria (CSU). It’s a confusing condition, often for patients and physicians alike. “Idiopathic means we have no idea why it’s happening,” says Adam Friedman, M.D., professor of dermatology at George Washington University School of Medicine and Health Sciences in Washington, D.C. The irritating welts seem to appear out of nowhere, with fresh outbreaks occurring most days for a minimum of six weeks—and sometimes continuing for as long as four or five years—usually with no known cause. What’s more, when hives occur in a deeper layer of the skin, they can bring the scary side effect of swelling (angioedema)—which can be serious if this happens inside your mouth or throat.
Those who have the chronic condition are often left scratching their skin and their heads, trying to figure out not only why they have it, but also who should treat it: A dermatologist? An allergist/immunologist? Here, we’ll break down what these doctors can do for this chronic condition.
How Does a Hive, Chronic or Otherwise, Happen?
Before we talk doctors, let’s chat about the making of a hive. That red, swollen splotch is actually an immune response. It means your body perceived something to be a threat and responded with a flood of antibodies. Those antibodies bind with cells in your skin called mast cells, which then pump out histamine. To ward off this supposed threat, histamine sets off an inflammatory cascade, bringing the familiar redness, swelling, and itchiness. Regular hives (also called acute hives), tend to be short-lived episodes—a few hours or a few days—and are often triggered by a specific allergen.
However, a diagnosis of CIU usually means your physician can’t find a reason for your hives. It’s often not an allergic response and typically remains a mystery—but may be a result of your immune system going haywire, with your skin paying the price. In half of all cases of chronic hives, an overactive immune system is to blame. In fact, CIU is common in people who already have another autoimmune disease such as Hashimoto’s disease (underactive thyroid) or Lupus, in which your immune system attacks your own healthy tissue and organs.
How Can a Dermatologist Help?
A dermatologist specializes in skin diseases, including CIU. Your visit with a dermatologist will start off with a thorough medical history, followed by an exam, but don’t expect a battery of tests.
“For the most part, when it comes to chronic hives, we never identify why someone has it, which is why the current recommendation is not to do a crazy, expensive workup—only if the story pushes you in the direction of an underlying illness or condition,” says Dr. Freidman.
The first order of business, then, is typically to confirm that you are in fact getting hives and not another skin condition, like a rash. Hives move around, and they’re typically inducible by scratching, so your dermatologist may lightly scratch the surface of your skin with an end of a tongue suppressor to bring one out. This diagnostic is aptly named a scratch test.
If your doctor suspects your hives are really a symptom of another condition or infection, such as Helicobacter pylori (H. pylori), a bacterial infection, he or she will do blood tests. There is limited data about how commonly H. pylori causes CIU, but one small study in Advances in Dermatology and Allergology showed 36 of 100 patients with CIU also had H. pylori, suggesting it should be part of a CIU workup.
Your dermatologist may also perform a skin biopsy to rule out a rare condition such as urticarial vasculitis, which is inflammation of the small blood vessels that causes a hive-like reaction. But, again this condition is very uncommon, and hives wouldn’t be your only symptom. You’d likely have joint pain, fever, and swollen glands, too.
When Hand was referred back to her dermatologist by the allergist, it was to get a skin biopsy. But Dr. Friedman says it’s not necessary to diagnose CIU. “If we're going to do a biopsy, it's to really look for something else, such as urticarial vasculitis.” Hand’s biopsy just showed non-specific skin inflammation, with no other cause for concern.
If your dermatologist can’t pinpoint an underlying reason for your hives—which is common—he or she will move onto treating them. If the hives are appearing in only one area of the body (Hand’s crop up on her neck, and nowhere else), your dermatologist may prescribe topical cortisone. If the hives are widespread, the first line of defense is a non-sedating OTC oral antihistamine, but at higher doses than you would take for your seasonal sniffles. “You can actually go up to four-fold the recommended dose on any over-the-counter antihistamine for the management of chronic hives, building up to that dose within a month,” says Dr. Friedman.
Now, you’re probably thinking those boxes are pretty small, so this approach could get costly. Insurance won’t cover the quadruple dose, says Dr. Freidman. “I prescribe the [standard] dosing, which many insurances will cover, and have patients supplement the rest over the counter,” he says. A dermatologist may also add on traditional heartburn meds to anti-histamine treatment. That's because there's some evidence that skin cells have two histamine receptors (H1 and H2), and these drugs each target one.
If those meds don’t work within a month, the next move is the injectable Xolair (omalizumab), a monoclonal immunoglobin E (IgE) antibody that is FDA-approved for CIU. It works by binding to IgE (those antibodies we mentioned before) in your bloodstream before they attach to the mast cells and release histamine. For more severe cases, a dermatologist may go off-label with immune suppressants typically used for severe cases of psoriasis or eczema including Trexall (methotrexate) and Grenaf (cyclosporine), which stop hives by slowing down your overactive immune system.
How Can An Allergist/Immunologist Help?
An appointment with an allergist/immunologist for chronic hives isn’t all that different than one with a dermatologist. However, if your allergist suspects an allergy, she may do allergy testing with blood tests or skin pricks. But, unlike the acute variety, chronic hives are rarely caused by an allergen. This specialist may also do more autoimmune tests to rule out an underlying autoimmune condition, including a chronic urticaria (CU) Index test to measure the amount of histamine in your blood.
"A positive CU Index is a value greater than or equal to 10—which may point to a possible autoimmune conditions and other conditions that can be associated with histamine release," says Clifford Bassett, M.D., an allergist/immunologist and assistant clinical of medicine at NYU Langone Grossman School of Medicine in New York City.
Treatments prescribed by an allergist will also typically include those high-dose oral anti-histamines, as well as histamine blockers. Bassett also prescribes Xolair injections for more complicated cases that don’t respond to the oral meds. An allergist may also be able to counsel you on what’s triggering your hives or making them worse (not necessarily causing them). “In the allergy community, we spend an extraordinary amount of time taking a detailed history, looking at your environment, and your exposure,” Dr. Bassett says. Certain foods, medications, hot or cold weather, and products you’re currently using can all factor in.
Roxanna White, 44, from Kansas City, MO, wound up at an allergist/immunologist office after seeing numerous doctors ranging from her family internist to an endocrinologist. She even ended up in the ER with painful, swollen hives around her joints. Ultimately, it was an allergist/immunologist who used the CU index test to diagnose her with autoimmune urticarial (meaning her hives are definitely caused by her overactive immune system), administering Xolair to treat her symptoms.
Is There a Difference in Care?
Honestly, not much. With both types of physicians, finding a culprit behind your never-ending hives tends to be more of a process of elimination, ruling out allergens, infections, and underlying conditions. If your physician comes up empty, you’ll be given the diagnosis of CIU, and prescribed a medication to help stop the hives and prevent future flare-ups.
Of course, you may have slightly different tests done with a dermatologist than you would with an allergist, and vice versa. For example, only a dermatologist will do a biopsy, if warranted. An allergist/immunologist may do more extensive allergy and autoimmune testing than a dermatologist. But ultimately, treatment options for CIU are the same whether you see an allergist or a dermatologist.
One possible point of difference? The use of immune suppressants, drugs that are typically reserved for severe skin conditions such as psoriasis and eczema, among dermatologists. “We’re very familiar with these immunosuppressant in dermatology; we’ve been using them for other inflammatory skin diseases for years,” says Dr. Friedman.
Also good to know? An allergist and dermatologist may even collaborate on a case. “We’ll often work [together] if we think there’s value in [doing] a biopsy,” adds Dr. Bassett.
Treatment—From Either Type of Doc—Can Bring Relief
So, how are Hand’s hives on her neck right now? After a long period of being clear, they’re making a comeback (a classic hallmark of CIU), so she’s returned to rubbing on topical steroids prescribed by her dermatologist. And White has continued to receive Xolair injections from her allergist-immunologist every four to six weeks for the past seven years. “I’ve never been in remission,” she says. But, she adds, the regular shots keep her hives under control.