Shingles: The Painful Truth
Shingles strikes at least 850,000 Americans every year -- most victims are over 60. In fact, by the time they reach the age of 85, 50% of adults have been affected by shingles, sometimes with devastating effects. Here's what to look for.
Reviewed By Gary Vogin
Nearing 80-years-old in 1997, Gita Braude, of La Jolla, Calif., had an outbreak of shingles . It's a disease often thought of as minor, but it changed her life dramatically. Before shingles, Braude was energetic and athletic. She worked as a medical editor and played tennis three times a week. Since shingles struck and a complication developed, Braude has suffered from pain that is "so excruciating and piercing, my head feels like it's locked in a vise."
Unlike some shingles sufferers who find no solace from their pain, Braude gets relief from Vicodin, a narcotic painkiller. But the relief comes at a cost: diminished mental clarity and memory. "I'm beginning to resent that very much," she says. "I'm trying very hard to get off it."
The tragedy is that Braude's case of shingles might not have progressed to such an intractable stage if it had been diagnosed correctly in the first place and then treated promptly. In recent years, researchers have identified several drugs that seem to offer real relief -- if they are taken within three days of the appearance of symptoms.
The Shingles Story
Each year in the United States, shingles strikes at least 850,000 people. Although children and younger adults can get it, most victims are over 60, and their immune systems have begun to wane. By age 85, 50% of people will have had a bout. Of those who do, 60% to 70% will develop chronic pain in a region supplied by a particular nerve, a complication known as postherpetic neuralgia (PHN) that can last for months or years. In Braude's case, the affected nerves pain were located on one side of her face.
Shingles occurs only in those who have previously had chicken pox, which is caused by a virus called varicella zoster. As the chicken pox blisters heal, the virus retreats from nerve endings in the skin and travels up nerve fibers along both sides of the spine, according to Michael Oxman, MD, professor of medicine and pathology at the University of California in San Diego. The virus lodges in groups of nerve cells known as sensory ganglia, remaining dormant until a stressful event, such as the death of a spouse or an illness, "awakens" it. People whose immune systems are compromised by HIV, Hodgkin's disease, chemotherapy, or high doses of steroids are also at higher risk for developing shingles.
After decades of "slumber," the virus may leave the sensory ganglia and travel back down the nerve fibers to the skin, where it can cause pain or a tingling sensation and the characteristic shingles rash -- usually a line of red spots or bumps that turn into blisters in two or three days.
The symptoms of early shingles are vague and confusing to doctors and patients alike. They may mimic flu -- with headache, nausea, fever, and chills -- or include pain, burning, itching, or tingling on one side of the face or body. Doctors have mistaken early signs of shingles for a variety of other ailments including Bell's palsy, a herniated vertebral disc, gallstones, or appendicitis, depending on the location of the affected nerve. Not surprisingly, the disease is frequently misdiagnosed.
And that's just what happened to Gita Braude. When she went to the hospital with head pain, the doctor diagnosed a middle-ear infection and prescribed medication. A few days later, when the characteristic rash broke out on her forehead, she telephoned the doctor, who suspected it was a reaction to the medication, and told her to stop taking it. But when a former colleague of her late husband, who was an infectious disease specialist, stopped by to visit, he immediately identified her rash as shingles. Unfortunately, it was now too late to significantly alter the course of the neuralgia that was to come.
The Typical Course
In most cases, the shingles blisters appear within two to three days of the initial symptoms, usually in a small region on one side of the body. The affected area will be extremely painful or itchy, and, depending on its location, the rash may make it difficult to bathe, dress and sleep. Lesions on the upper face (especially the tip of the nose) may indicate that the eye will be involved as well as the skin, with the risk of chronic inflammation and loss of sight. In such cases, the patient should see an ophthalmologist promptly. After the blisters heal and scab, the pain may continue for weeks or months before gradually fading.
But for those like Braude who develop PHN, chronic pain may persist for months or years. "The pain is very different from pain we usually experience," says Kenneth Schmader, MD, a geriatrician at Duke University Medical Center and Durham VA Hospital in Durham, N.C. Patients describe it variously as a burning, aching, or stabbing pain accompanied by such intense skin sensitivity that the brush of clothing or even a breeze is excruciating.
Braude's pain is so severe that she requires painkillers three times a day. Some patients are unable to find relief at all. Karin Petersen, MD, of the Pain Clinical Research Center at the University of California in San Francisco, says one of her patients comes to appointments with his shirt cut away so it won't touch the painful area. Other patients have actually moved to Hawaii because its tropical climate makes it easier for them to wear little clothing.
But the worst part of the disease, say Oxman and Schmader, is the effect it has on the lives of elderly people who are trying to remain independent. PHN can leave them exhausted from lack of sleep, unable to perform the simplest daily activities, and in pain so debilitating that they find they can no longer live alone. In a few cases, patients have resorted to suicide.
Treat Shingles Early
The key thing to remember about shingles is to seek treatment promptly. Doctors can then choose between a number of promising treatments to shorten the duration of PHN if you should develop it. Some antiviral drugs have been shown to reduce the duration of PHN if begun within the first three days of the appearance of tingling or rash, according to a recent review of 42 studies in the March 2000 Journal of Family Practice. Low doses of amitriptyline (Elavil), a tricyclic antidepressant, may help prevent PHN, though more studies are needed to verify this.
If pain is severe enough, a new lidocaine skin patch that acts as a local anesthetic can be considered, as can morphine, according to Michael Rowbotham, MD, founder of the Pain Clinical Research Center. Tricyclic antidepressants and Neurontin also may be tried at that stage. All ease the pain somewhat for many patients but do not eliminate it. Over-the-counter capsaicin creams (derived from cayenne peppers) are also effective for some.
Some day, a vaccine to prevent shingles may become a reality. A large study led by Oxman is testing the use of a stronger version of a chicken pox vaccine developed five years ago. Recruiting of 37,200 volunteers at 22 sites across the country for the five-year study has now passed the halfway point (see "Join a Shingles Study" in Related Links). The researchers hope to prevent the disease by boosting the immune system's response to the virus.
If this happens, chicken pox and shingles may both become diseases of the past. But for now, a large percentage of the aging population suffers the second attack of the virus in an extremely painful way, making it crucially important that doctors and patients be vigilant in recognizing its symptoms and pursuing early diagnosis and treatment.
"I urge the medical profession to be aware and not to miss the diagnosis," says Braude. "I'm lucky to get relief, but it's still very disappointing not to be able to do what I love."
Originally published Nov. 27, 2000.
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Last Editorial Review: 1/30/2005 11:33:40 PM
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