By Elizabeth Chang
Washington Post Staff Writer
Tuesday, July 8, 2003; Page HE01

As the parent of a child with chronic eczema, I've found the past year or so exciting -- and nerve-wracking. Exciting because new treatments may offer better alternatives to topical steroids -- until now, the worrisome primary source of relief. Nerve-wracking because in this era of all-too-possible terrorist scenarios, it's been disconcerting to learn that eczema patients and those in their households should not, except under the most extreme circumstances, receive the smallpox vaccine.

Chronic eczema -- as opposed to allergic contact eczema, the kind you can get from poison ivyand other irritants -- is a hereditary disorder that affects as many as 27 million Americans, according to the Centers for Disease Control and Prevention (CDC). Formally known as atopic dermatitis, its hallmark is red, scaly, itchy rashes, often found in the creases of the neck, elbows, wrists and knees. Children with eczema sometimes scratch so much that the areas start bleeding and become infected. The constant itch can also keep them up at night, leaving them inflamed bundles of irritability. "I don't like that God made me so sensitive!" my 6-year-old daughter, Sara, will wail.

Though I, too, had eczema as a child, Sara's is much worse. The red patches cropped up behind her knees when she was a toddler; now they can also be found on her wrists and inside her elbows, even at times on her neck, ears and back. The inflammation seems to flare up with every change of season. Summertime, with the added irritation of chlorine from the pool, can be brutal. We fervently hope that she will be among the 40 percent of children with eczema who appear to outgrow the disorder by young adulthood.

Meanwhile, there is no cure for the condition -- which seems to be caused by an overreaction of the body's immune system -- and no surefire way to head off a flare-up, though a recent study from Great Britain indicates that applying a topical corticosteriod twice weekly to healed areas can help reduce relapses. That makes for frustration all around, for doctors and parents up against a sneaky opponent; for itchy, scabby, self-conscious children; and for lifelong victims of the condition.

"You can certainly minimize the triggers, but you can never completely remove [them]," said Carol Greenspun, a North Potomac mother of four who has had eczema since she was in second grade and who has a son with the disorder.

Though no one is sure why, incidence of eczema -- as well as other atopic disorders such as asthma, hay fever and peanut allergy -- appears to be rising. According to recent studies from Denmark, Germany, Sweden and the United States, up to 17 percent of schoolchildren have eczema -- about three times as many as in earlier generations. "There's better data for the asthma, but [eczema is] following the same direction, with a significant increase over the last few years," said Alan Moshell, a skin diseases specialist with the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Possible explanations for the increase range from too little exposure to antigens (because our houses are too clean) to too much exposure to dust mites (because our houses are too warm and well-insulated). There's also the possibility that the jump in numbers may reflect better tracking of the condition.

Whatever the case, clearly there are many parents out there struggling with many of the same issues that I am.

No Miracles Yet

Until recently, the most effective treatments -- other than reducing use of soap and water (they dry the skin) and staying away from irritants such as wool -- were creams and ointments containing steroids. But while steroids suppress inflammation, they do so in sledgehammer fashion, with potentially serious side effects. Steroids can thin the skin, changing its look and texture, and making it more vulnerable to flare-ups. The skin also may get used to steroids, so when the medication is stopped and inflammation recurs, it rebounds more dramatically. "It's a vicious cycle that keeps getting worse," said Moshell.

Continued use of steroids can have other cosmetic effects, including enlarged blood vessels and pigmentation changes -- an issue for my golden-skinned daughter, whose inner elbows and knees lightened when our family physician put her on a steroid that was too powerful. In the worst-case scenarios, strong steroids used over large body surface areas may be absorbed into the bloodstream and affect a child's growth.

Amy Paller, head of dermatology at Children's Memorial Hospital in Chicago, said concern about such side effects "has led to a hesitancy on the part of parents to use medication, even resulting in poor control of dermatitis."

So it was welcome news when the U.S. Food and Drug Administration (FDA) approved two alternatives to topical steroids, first Protopic (tacrolimus), an ointment, in December 2000 and then Elidel (pimecrolimus), a cream, in December 2001. Both are topical immunomodulators (TIMs) -- drugs that affect only the skin's immune cells, rather than all skin cells -- and are in the same category of drugs that help transplant patients fight rejection of new organs. The new prescription drugs seem to have fewer side effects, and unlike steroids, are safe to use on the face and near the eyes, though they tend to take longer to work and are more expensive. (A 30-gram tube of Protopic costs $55.99 at drugstore.com and 30 grams of Elidel costs $52.99, compared with $31.99 for the same amount of Cutivate, a prescription steroid.) "Nothing works for everybody," Moshell said. "But in the long run, because of the side effects, most people right now would rather control atopic eczema with immunomodulators, if possible."

Guy Webster, professor and vice chairman of dermatology at Jefferson Medical College in Philadelphia, estimates that nine out of 10 of his eczema patients are on TIMs. "I'm happy to not use steroids," he said. Paul Kravitz, head of dermatology at Inova Fairfax Hospital, cautions that the new drugs are not panaceas; he often prescribes them in combination with older treatments.

Some patients have already experienced problems. "The Protopic was helping, but the side effects -- the burning, the tingling -- was too much for me," said Greenspun, who recently switched to Elidel. She finds the Elidel less effective but more tolerable, she said.

While my husband and I were eager to have Sara try a non-steroidal drug, our experience has been mixed. To our disappointment, Elidel didn't help Sara much at all. She's had more luck with a regimen that alternates Protopic with a prescription steroid; the combination seems to be slowly relieving her latest outbreak, which was quite severe. Because the new drugs can take longer to work, we are all trying to be patient, but it is tempting to think about the "good old days" when the strong topical steroid we used cleared her right up. In some ways, ignorance is bliss.

Smallpox 'What If's

That's definitely the case when it comes to the smallpox vaccine -- a scary subject for eczema patients and parents of children with the condition, though recently released studies of vaccinated military personnel offer some comfort. Experts have warned all those with eczema or a history of eczema or any skin disorder to avoid getting the vaccine prophylactically because they are at risk for a serious complication called eczema vaccinatum, in which the smallpox vaccine replicates at the puncture site and spreads lesions to other parts of the body. According to U.S. studies from 1968, during the mass inoculation program before smallpox was eradicated, 10 to 40 cases of this potentially fatal complication occurred per million people receiving the vaccine for the first time. That, say experts, raises eczema patients' risks of complication from the vaccine beyond those for exposure to smallpox -- at least for now, when any threat from smallpox is only theoretical. The CDC is "being very cautious," said Joanne Cono, medical epidemiologist with the agency's Bioterrorism Preparedness and Response Program. "There's no circulating smallpox. We don't want to cause more injury with the vaccine than the good we do," she added.

Should a smallpox attack occur, however, the advice changes. Then, the risk posed by the disease would outweigh the risk of vaccine complications, and vaccination is advised within four days of exposure. "Even persons with a risk factor, if they have been exposed to a case of smallpox, they'll be advised to get the vaccine," Cono said. The same advice holds true, says the CDC, for those exposed to monkeypox. The advice gets more complicated, though. Not only should eczema patients avoid preventive vaccinations; experts say they should avoid close physical contact with anyone who has recently received the vaccine. Because the smallpox vaccine is a live virus, it can be spread until the vaccination site heals and the scab falls off, in about three weeks. Though inadvertent inoculation could occur in any setting in which some people have been vaccinated while others have not, experts say it is more likely to occur among people in close contact, such as those living in the same household.

So what about those military personnel who were vaccinated? According to studies recently published in the Journal of the American Medical Association, thorough screening for skin diseases has resulted in no reported cases of eczema vaccinatum in more than 450,000 military personnel vaccinated from December through May. There were, however, 21 cases of contact vaccinia -- cases of the virus in the vaccine spread by vaccinated service members to unvaccinated spouses, children, friends and others. And there was also a more unexpected complication: 37 of those vaccinated suffered heart inflammation. Based on this, a panel of medical experts advised the CDC against expanding the immunization campaign for first responders. Of course, the whole smallpox inoculation business makes for frightening scenarios for fretful parents.

During the first Code Orange alert last fall, my husband and I had anxious late-night discussions about what we'd do with our children if the vaccine were recommended for Washington area residents. We settled on taking turns getting vaccinated. (Although my eczema history should disqualify me, I was vaccinated as a child with no ill effects and wouldn't hesitate to be vaccinated again.) One parent would live elsewhere with our older daughter, Rachel, who does not have eczema. Then that parent and Rachel would return and the other parent would live elsewhere for a few weeks after receiving the vaccine.

Maybe this sounds like a bit of paranoia, but it feels better to have a plan. Still, we wondered: Would it be enough to keep our vaccinated selves away from Sara? Would we also have to keep her home from school, to prevent her from coming into contact with children who have gotten the vaccine and who might not be cautious about covering their vaccination sites?

I've broached these fears to dermatologists and to the CDC. I haven't gotten any definitive answers, perhaps because there are none.

Children were not quarantined during the previous vaccination program, notes the CDC's Cono, who thinks it "unlikely" that parents would be urged to keep young eczema patients home from school. "But it's all speculation," she said. "The policies haven't been developed." With the government behind in its smallpox inoculation goals -- of the nearly 500,000 health care workers and up to 10 million emergency responders who Bush advisers targeted for immunization by summer, fewer than 40,000 have been vaccinated -- it's unclear when -- or if -- such guidelines might be completed.

Concern about exposing vulnerable patients to a vaccinated individual worries some health care providers, too. "It's even been an issue for us," said dermatologist Paller. "We as doctors are first-line responders. Every day I see kids with eczema." One encouraging sign: In the recently completed military studies, not one of the more than 27,000 vaccinated health care workers transmitted the vaccine virus to a patient.

But the risk is still real, and so is the worry it causes. The best thing for parents at this point is to "be aware," said Paller. "Hopefully there's nothing anyone will ever need to do." That's true. But. like most everything associated with eczema, it's not very comforting. •

Resources

• The American Academy of Dermatology hosts a site on the World Wide Web, www.skincarephysicians.com/eczemanet, that provides news and information to eczema patients and their families. The academy's main Web site, www.aad.org, has a section called "Kids' Connection" that discusses eczema. 847-330-0230.

• The U.S. Centers for Disease Control and Prevention provides updates and information on smallpox vaccination at www.cdc.gov.