The signs aren’t always what they seem to be…

Many people think that shingles is just a rash, so they wait for it to go away like poison ivy and sunburn do. That’s a big mistake. If you suspect that you may have shingles, take action right away—it’s a neurological emergency.

The rash that we see on the skin, which develops on half the body only, usually in a band around the torso or above and around the eye, is just the tip of the iceberg.* The center of the infection is deep inside the body, within sensory nerve cells close to the spinal cord or brain. In some cases, the infection can spread into the spinal cord or brain to cause myelitis or encephalitis, stroke or spinal-cord injury.

New research finding: A study published in the journal Neurology earlier this year found that the risk of having a stroke years later was up to 74% higher in people who had been diagnosed with shingles before age 40. The virus also can cause vision loss or hearing or balance problems.

But the most common complication of shingles is post-herpetic neuralgia (PHN), where pain persists after the rash heals. The pain can be intense—some people compare it to childbirth or passing a kidney stone. It gradually improves, but that can take months or years, and sometimes it never goes away. The nerve damage that causes pain also can lead to intense itching, known as post-herpetic itch. Although both are treatable, the medications often have side effects that make them unpleasant to use.

The best way to avoid getting shingles (and its complications): Get vaccinated. For people age 60 and older, the onetime vaccination reduces the risk of getting shingles by half and reduces the chance of the persistent pain of PHN by two-thirds. It is even more effective in adults ages 50 to 60, reducing shingles risk by 70%.

Even so, a sobering new study shows that less than 7% of adults who are eligible for the shingles vaccine have received it—even though it has no major side effects.

Why are so few people getting vaccinated? One reason is that there are widespread misconceptions about who should get this vaccine. Everyone in the US has been exposed to chicken pox by his/her adult years and is at risk for shingles. However, many people think only adults in their 70s and 80s, who tend to be at greatest risk for the illness, should receive the vaccine.

The truth is, the shingles vaccine is important for people who are younger than that, but there’s not a consensus even among government agencies. The CDC recommends it for adults who are age 60 and older, while the FDA has approved it for people age 50 and older. Ask your physician for his recommendation.**

Contrary to popular opinion, even children, college students and adults in their 30s and 40s can develop shingles, although far less often than older adults. Impaired immunity—not only from aging but also from immune-suppressing drugs or chronic diseases such as HIV, cancer or rheumatoid arthritis—is the main shingles risk factor. But young people who don’t have these conditions can still develop the illness.

To give yourself—and loved ones­­—the best chances of avoiding shingles, here are additional misconceptions you should know about the condition…

Misconception #1: You can’t develop shingles more than once. Having shingles boosts your immunity and offers some protection against a rapid recurrence. But that “booster effect” can wane, and you can have a second attack. Furthermore, people with impaired immunity may not experience this effect and can have recurrent or prolonged episodes.

When researchers from the Mayo Clinic recently examined medical records from nearly 1,700 patients, they found that more than 6% of shingles patients had subsequent attacks. So even if you’ve had shingles, talk to your doctor about ­vaccination.

Misconception #2: The pain will end in a few weeks. Everyone with shingles breathes a sigh of relief when the painful rash is gone—usually within two to four weeks. But in some cases, the problem continues. The older you are, the longer the pain can continue. Sometimes, it never completely subsides.

Misconception #3: There’s no harm in taking a wait-and-see approach. Shingles symptoms can start days or a week before the rash appears. You may notice pain or itching in a band on one side of your body before the rash appears. If pain occurs on the chest, some patients worry that they could be having a heart attack. Even without the rash, a one-sided area or band of pain or itching is highly suspicious for shingles, particularly in older or immunosuppressed patients.

Savvy doctors will consider starting treatment with antiviral medications even during this early “prodrome” stage, when these drugs may abort an attack.

Even when started after the rash appears, anti­virals significantly reduce the severity of the rash, its pain and also the risk for PHN and other complications. So if your regular doctor can’t see you immediately when you first notice symptoms, go to an urgent-care center or an emergency room .

If the doctor orders a blood test to identify shingles, ask to start antiviral medications immediately. These medications, specifically acyclovir (Zovirax), famciclovir (Famvir) or valacyclovir (Valtrex), can reduce the risk for PHN.

Important: Quick treatment is particularly important if the rash occurs anywhere near the eye. See an ophthalmologist immediately. Most people do not realize that shingles can cause corneal ulcers, glaucoma and even blindness.

In addition to antiviral drugs, you’ll probably be given steroid eyedrops to reduce inflammation and possibly a short-term course of oral steroids. Steroids can impair immunity, so don’t take them unless you’ve already started an anti­viral drug.

Misconception #4: There’s not much you can do for the painful rash. Even though antiviral medication is the main treatment, low doses of nortriptyline (Pamelor, Aventyl) can reduce pain. The drug also improves sleep and reduces the risk for PHN by about 50%.

Although originally marketed to treat depression, nortriptyline and other tricyclic antidepressants are unsurpassed in their ability to treat neuropathic or nerve-injury pain such as that caused by shingles. Inexpensive generics are available, and one dose lasts more than 24 hours. But they must be taken for a few weeks to fully kick in, and they can have side effects, such as dizziness and weight gain, so discuss these drugs with your doctor.

An Experimental Shingles Treatment

Transcranial magnetic stim­ulation, a noninvasive procedure that uses magnets to trigger firing of certain neurons in the brain, appears to relieve post-herpetic neuralgia (PHN) in some patients who suffer pain three months or longer after their shingles rash has healed.

This new approach is still in the experimental stages. Patients with PHN and/or post-herpetic itch who want to participate in a clinical trial and are able to travel to Massachusetts General Hospital in Boston can get more information at 617-726-7632 or Clinical­Trials.partners.org (search for “Transcranial Magnetic Stimulation”).

*To view photos of the shingles rash, go to ShinglesInfo.com.

**Because the shingles vaccine contains a live virus, it is not recommended for people undergoing radiation or chemotherapy…those with some cancers…or patients with HIV or other conditions that affect the immune system.