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Ben Shaberman

THE FURTHER ADVENTURES OF ECZEMA BOY

July 11th, 2000 by Ben

The Washington PostTHE FURTHER ADVENTURES OF ECZEMA BOY;

In which our hero–undaunted by white coated villains who insist he is beyond help–sets out to explore the dermatologic frontier in search of scientific secrets, medical marvels and treatment treasures–or, at the very least, something to stop the itching.; [FINAL Edition]

Ben A. Shaberman. The Washington Post. Washington, D.C.: Jul 11, 2000. pg. Z.10

Full Text (2121 words)

When my allergist recently declared that I have the worst case of adult eczema that he has ever seen, I was stunned. And impressed. “Wow,” I thought to myself. “A lifetime achievement award for bad skin!” But who do I thank, the Academy of Skin Disease Arts and Sciences? And how about all the little people who make eczema possible?

Not that my achievements have ever gone unnoticed. When I have an outbreak of the red, crusty and swollen eruptions — which is to say, nearly all the time — everyone knows it. Whether I am at work, on a date, at the grocery store or just looking at myself in the mirror while brushing my teeth, there it is, rampant on my face, around my eyes and covering much of the rest of my body. My forehead is particularly bad. There I get dry, red, crusty patches. When it gets really bad, it erupts into scabs.

I get questions and stares on a regular basis. Kids are especially awed. When kids stare at me, I want to say, “No, I’m not the Creature from the Black Lagoon, but I did meet him once at an autograph signing.” Or, puffing out my chest and striking a suitably heroic cartoon pose: “Not to fear, young man, I am Eczema Boy, and I defeat evildoers by hypnotizing them with my incessant scratching and picking! Step back, there’s some radioactive ooze now!” But, of course, I don’t. I just pretend I don’t see them staring.

Many of the people I know — co-workers, family, friends — often ask how my skin is. And, like most how-are-you niceties, it’s really a rhetorical question. If they know me at all, they know that the last time I could honestly answer that question with “pretty good,” Gerald Ford was singing the praises of Whip Inflation Now.

What was so difficult about hearing my doctor’s comment about reaching the dermatologic pinnacle was that I had been quite aggressive about treating my condition. This was not like the guy who never mows his lawn getting the Ugly Yard award. This was like the guy who busts butt every weekend with his weed whacker and fertilizer winning the dubious distinction.

I share my affliction with about 15 million Americans. Also known as atopic dermatitis, eczema is a chronic, hereditary disease that is allergy-related. Anything from food to dust mites to extremes in weather may trigger an outbreak.

Because by all appearances I am allergic to every element in the periodic table, it is impossible for me to avoid the stuff that causes it. Though eczema is common in babies and children, they often grow out of it. At 39, I have somehow managed to grow into it, with the condition getting considerably worse over the past five years.

Though there is no cure from eczema, there are a number of simple, conventional treatments that provide relief for people with milder cases. These treatments don’t faze my condition, however. They only make it laugh.

For instance, many people use hypoallergenic moisturizers to relieve the dryness; hard cases may prefer petroleum jelly, which seals in moisture rather than just applying it from the outside. Over- the-counter cortisone creams and ointments can significantly and safely–if briefly–reduce itching, swelling and redness. (I use them regularly, and get only minor relief.) Antihistamines, over-the- counter and prescription, are also used to relieve itching.

Some people get relief through sun exposure (in reasonable amounts, of course) and, for some reason, bathing in ocean water. Other treatments, such as avoidance of certain foods, allergen desensitization and stress reduction (including psychotherapy or behavior modification therapy), may provide some relief.

None of these, I should say, works very well for me.

Interestingly, when I was a kid, sun exposure healed me right up. Maddeningly, at this point in my life it is literally poison for my skin–I get sun poisoning, my entire face turning into a ruby balloon. I have also tried desensitization–trying to develop immunities to various allergens–several times. I’ve avoided numerous foods–I’m now a vegetarian and even went vegan for quite a while. And I’m pretty good, as eczema sufferers go, at dealing with emotional issues and stress. I had a masseuse who was very sympathetic and was diligent about rubbing oil into the really nasty spots. None of these has helped my skin, but the massages sure felt great.

The bad news is, for chronic, moderate-to-severe “eczematics” like me, seeking relief via more ambitious measures often carries a risk. Immunosuppressive medications such as oral and topical steroids (prednisone and hydrocortisone) will often clear things right up. The problem is that long-term use of steroids, especially taken orally, is inevitably harmful. The list of common side effects is very long and ominous, starting with infection, and skin with eczema is highly susceptible to infection anyway. Other side effects include high blood pressure, diabetes and loss of bone mass. Topical steroid preparations can permanently thin and damage skin. One of my doctors, Brian Turrisi of Washington, said, “Taking steroids is like making a pact with the devil. You will eventually pay a price.”

And so I have used steroidal treatments only judiciously, in low doses or in brief bursts for bad outbreaks. Lately, as my condition has worsened, I’ve used them more liberally.

Some dermatologists use phototherapy, which combines ultraviolet light with the drug psoralen, though this approach, like steroids, can be damaging to the skin in the long run.

Having had limited success with even more aggressive treatment, I decided to journey, like the dermatologic superhero I am, to the fringes of eczema therapy. I went to places few eczematics have gone, to places only, say, Rod Serling would have gone if he had had eczema as bad as mine.

A couple of years ago, as my condition worsened–my eyes became very swollen and I developed abrasions on my cornea from the irritation–doctors at the University of Miami and I got bold and tried a risky therapy: cyclosporin, an immunosuppressive drug that was developed to keep transplant patients from rejecting their new organs. The idea made sense to me–my body was, in a sense, rejecting my skin (even though it was, I swear, the original skin my body came with). My dermatologist told me that one of his patients, a cruise line employee, was thrilled with the therapy. I figured if it was good for Captain Stubing, it would be good for me.

Unhappily, I made the tactical mistake of reading the cyclosporin package insert before taking the first dose. The warnings, cautions and considerations were endless. With many drugs, studies have indicated that side effects are not very common. With cyclosporin, you were almost guaranteed to get sick on the stuff: malaise, chills, fever, high blood pressure, even hirsutism (extra hair!). It was as if I were about to take uranium tailings.

Though the therapy did clear up my skin, after about six weeks I developed–you were about to guess this–fever, malaise and chills. Call me a wuss, but I didn’t wait for the hirsutism to kick in, and quit taking the medication. Unfortunately, my side effects persisted even after I stopped the pills. Further testing revealed clusters of red blood cells in my urine and strange nodules on my right lung. After two hospitalizations, many tests, surgery to biopsy my lung, and the not entirely irrational fear of cancer or tuberculosis, doctors determined that my immune system had “over-compensated” for the suppressive therapy.

But Eczema Boy, that hearty soul, was soon back at his wild explorations.

About eight months ago, I decided to try something different and went to visit a well credentialed, highly recommended practitioner of Chinese medicine. He was also an MD, which gave me more confidence. Over a period of four months, we tried acupuncture and herbs, but nothing worked. Though I enjoyed the 45-minute sessions of acupuncture–it was actually relaxing, even with needles protruding from my hands and ankles–I got no relief from any symptoms. And because my insurance covered only about half of this expensive, time- intensive therapy, I gave it up.

Shortly after my return from Eastern medicine, I made a fortunate personal connection to the National Institutes of Health (NIH), and for absolutely no (financial) cost, I was poked and prodded by NIH ophthalmologists, immunologists and dermatologists. NIH’s decision to give me a look was not part of any program, per se. I believe they did it out of empathy and medical curiosity. I was used as a teaching tool for their scholarly colleagues. I posed for a lot of pictures. I wasn’t just Eczema Boy, I was an eczema poster boy!

They performed all kinds of tests, took cultures, investigated me for new life forms. And ultimately, they . . . came up with nothing new. They confirmed that, well, I had really bad eczema.

Last March, I heard about a new therapy that suppresses the production of IgE, immunoglobin E. IgE is the stuff in your body that causes allergic symptoms such as a runny nose, scratchy throat and stuffy nose. The new knowledge about an IgE inhibitor–something that would prevent my body from issuing an allergic reaction, and maybe stop the eczematic eruptions–prompted me to go back to my allergist, Henry Fishman, who is in private practice in Washington.

Both he and I contacted Genentech, which along with Novartis Pharmaceuticals and Taxon Inc., are seeking FDA approval for this anti-IgE therapy, whose product name is Olizumab. (For you technical weenies, the therapy is known as rhuMAb-E25, a recombinant humanized monoclonal antibody to immunoglobin E.)

The therapy, which consists of an injection every four weeks, has proved highly effective in treating hay fever and asthma in people aged 12 to 75. But, alas, it is not being evaluated for eczema relief, though Fishman and Genentech’s customer representative agree that eczema relief is a reasonable possibility. Further trials are possible. (Contact Genentech at 888-662-6728 for future trial information.) FDA approval and subsequent mass production are a year or more away. I’d hoped that my status as Eczema Boy might qualify me for a special exemption. But no.

Next Fishman suggested we investigate interferon gamma, product name Actimmune, currently marketed by InterMune Pharmaceuticals. Actimmune is a powerful therapy that reduces the incidence of infection in people with chronic granulomatosis disease (CGD), which attacks healthy tissue and is much more serious and potentially life- threatening than eczema. As an alternate therapy for people with atopic dermatitis, however, it has been successful.

Unfortunately, Actimmune has many side effects (my friends: fever, malaise, chills) and at $500 per week is priced well beyond the means of your typical hard-working dermatological superhero. Furthermore, the InterMune customer representative conceded that the long-term side effects of interferon gamma were, well, not known. Given all this, the doc and I decided not to pursue this option.

Still not ready to hang up my cape, I revisited a new, promising option that my dermatologist, Arthur Ugel of Bethesda, had mentioned about a year ago.

The medication is an immunosuppressant called tacrolimus that is being tested in ointment form as a treatment for eczema. Unlike steroidal preparations, tacrolimus does not thin treated skin. A year ago, we could not find any trials for this drug. However, after contacting Fujisawa, the maker of tacrolimus, I managed to slip into a trial here in Washington. (I happened to be the last subject to get in!) I started using the ointment June 26. (For info on other trials of this medication, call 877-773-4302.)

During this trial, I will abandon the steroidal treatments I use now, both oral and topical. The hope is–as other trials have demonstrated thus far–that I will get equal or better relief from tacrolimus with none of the many side effects that one gets with steroids. Meaning I can use it often. And the therapy is likably simple: I apply the ointment to affected areas twice daily over the next year.

Having been through so many promising treatments, at this point I am–I think the correct term of art is–”cautiously optimistic.” But I have not given up in this scabby war. In the words of Monty Python, “I’m not dead yet! See? I have a smile on my face.” I don’t believe eczema is my destiny. I believe overcoming it is. I now imagine the day not too far in the future when I am at the beach, wearing only skimpy shorts and a slick film of sunscreen, surrounded by supermodels caressing my flawless skin. “But where,” they will tease, “did Eczema Boy go?”

I, bronze and reckless in the bright sunshine, will smile a knowing smile.

Ben A. Shaberman is a writer who lives in Washington.

Posted in The Washington Post

One Response

  1. Monica

    I’m glad you have made htough your endeavors to trying to cure your eczema. I hope I reach that point to…having to suffer this for a decade. Believe me I was observed by medical students as the “Girl with All Types of Eczema.” Reading stories like this make me have hope that I’ll have the confidence to be myself again,too.

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