March 8, 2013 | 3:46 PM |

The Scariest Reason To Get The Shingles Vaccine

FILED UNDER: Medicine/Science, Personal Health, chicken pox, shingles, vaccines
Shingles rash on the chest of a 90-year-old man (Courtesy of Merck)

Shingles rash on the chest of a 90-year-old man (Courtesy of Merck)

First came several hours of blackest end-of-vacation stress. Not over anything truly serious, just garden-variety panic, as in, “We forgot the wallet and we’re late for the plane but just took the wrong exit for the airport.” It brewed inside me for hours amid my self-recriminations on the endless flight home.

Then, as we were finally filing off the plane, I felt a prolonged itchiness on the left side of my torso. Discreetly peeking under my shirt, I found a cluster of red pinpoints, sprinkled in a strip near my navel. “Oh, hell, not this too,” I thought. “Maybe it’s shingles from all that stress. I knew I should have gotten that shot.”

Shingles, in case you’ve missed all the vaccine ads on TV and in drugstores lately, is an often excruciating, blistery rash caused by the reactivation of the chicken pox virus that lies long dormant near your spine after your childhood chicken pox. It hits about a million Americans a year. The TV ads have a horror-movie ring, warning that the virus “may already be inside you.” A tough-looking firefighter tells you it was the worst burning sensation he ever encountered, and “it is bad.”

Think of it as ‘Extended Release’ shingles. Or as the closest thing to the trials of Job for an unlucky few.

Ha. I scoff at those ads. I’m not scared of shingles. Sure, I’ve heard the pain compared to third-degree burns and medieval torture, and very rare complications can cause blindness or affect the brain. But it generally lasts no more than several weeks, and that’s just not a frightening enough prospect to energize me to get an extra vaccine. Especially one that can cost me $185 even at a Costco pharmacy (which I know because I just called.)

No, the reason my heart dropped when I saw my rash — and the reason I am now going to pay out of pocket for the vaccine because my health insurance covers it only for those over 60 — is an affliction even less familiar to most people than shingles. It is called postherpetic neuralgia. Think of it as “Extended Release” shingles. Or as the closest thing to the trials of Job for an unlucky few.

We have a family friend whose epic case poisoned his life for years, but at my request, Dr. Anne Louise Oaklander, a Massachusetts General Hospital neuropathologist and researcher, refreshed my fear. Her postherpetic neuralgia patients, she said, “tell me that every day is spoiled, and that they are in chronic pain,” sometimes for years — pain so bad that it can lead to depression and job loss and isolation. In rare cases, even suicide.

“Shingles is no fun,” she said, and its rare complications can be serious, “but it passes,” and “the reason to get the vaccine is to avoid postherpetic neuralgia,” which affects 10 to 20 percent of people 60 and above who get shingles. Rates rise rapidly with age.

On the fence

At age 52, I’ve been on the fence for a while about getting Zostavax, the shingles vaccine. Though the FDA approved it in 2006 for virtually everyone over 50, Zostavax has been slow to catch on, hindered by supply shortages and other challenges. More on that later. But Merck, which makes Zostavax, says the pace is picking up.

“We shipped a lot more vaccine in 2012 than in 2011, almost double the amount,” said Dr. Eddy Bresnitz, the executive medical director for adult vaccines at Merck.

Should you, too, get on that bandwagon? The answer is a deeply personal decision — ideally, in consultation with your doctor, of course. It’s even more personal than most vaccine decisions, because shingles is not generally infectious, so you don’t have to factor in good citizenship.

Rather, your choice may hinge more than anything else on your age, your money, and what you fear, or don’t.

“One of the things that’s really unique about this vaccine is that it prevents pain,” said Dr. Rafael Harpaz, a CDC epidemiologist who has worked on shingles for nearly a decade. And attitudes on pain vary. “Some people wouldn’t care that much if they had mild shingles and they wouldn’t pay anything to avoid it,” he said, “but, like you, would be scared to death about getting something that would be life-shattering.”

Running the numbers

An American’s average lifetime risk of getting shingles is somewhere around 30 percent, Dr. Harpaz said. “But the most important thing to know about the epidemiology is how it’s related to age.”

Though everyone who’s had chicken pox (the actual illness, not the vaccine) can get shingles, “the rates start to take off at 50. But a person who’s 50 is at much less risk than someone who’s 60, who’s at much less risk than someone who’s 70, and so forth.” And the older the patient, the more severe the symptoms tend to be.

(Source: CDC. 'Zoster' refers to shingles.)

(Source: CDC. ‘Zoster’ refers to shingles.)

Age affects the risk for postherpetic neuralgia as well, Dr. Oaklander said. By age 70, she said, about half of shingles patients will have post-herpetic neuralgia for at least a year. “Shingles becomes a medical emergency,” she said.

Vaccine as defense

So how well does the vaccine work? Dr. Harpaz says the overall figure is that the vaccine works to prevent 51% of all shingles cases. But it works even better at preventing the really severe cases likeliest to lead to postherpetic neuralgia.

“The bottom line is, if you look at those life-shattering cases, the vaccine seems to prevent like 75 to 80 percent of those, whereas it prevents 51% of all shingles,” he said.

Good news, right? And Dr. Oaklander offers more reason to get the vaccine sooner rather than later: Well-done research, she said, has found that the vaccine is even more effective between age 50 and 60, reducing the risk of shingles by 70 percent in people in their fifties.

But nothing can be that simple, right? Because there’s another factor we have to work in: How long the vaccine lasts. And the vaccine is too new for optimal timing to be clear.

A recently completed study followed up on people in the vaccine’s original clinical trial to see whether their protection wore off after ten years, Dr. Harpaz said, and preliminary results suggest that may be the case.

So keep in mind, he said, that a vaccine you get in your fifties may be wearing off as your risk rises.

Boomer coverage limbo

I’ll get to insurance coverage, but first, just a bit of back-story. The FDA did approve the Zostavax vaccine for people above 50, but the CDC recommends it only for an older cohort, above 60.

Why? Dr. Harpaz explains that when the CDC was considering the issue, the vaccine was having persistent supply problems, and the CDC worried that if it lowered the cut-off age, the younger boomers’ demand would siphon away vaccines from the older people who needed them most.

These days, supply has been ample for more than a year now, and the CDC may lower its cut-off age in the future. But for now, while virtually all insurers cover Zostavax for age 60 and above, people in their fifties remain in a bit of limbo.

Among people in their fifties who have private insurance, about one-half would be covered for Zostavax, estimated Dr. Bresnitz of Merck. Here in Massachusetts, I asked two major insurers, Blue Cross/Blue Shield and Tufts Health Plan, and both go by the CDC, covering the vaccine only for those over 60.

Instead of, say, an evening of dinner and a play, we can lower our risk of prolonged agony.

Medicare, the public insurance for those over 65, covers Zostavax as well, but in its ‘part D’ prescription benefit, so patients may find that the process can be cumbersome and co-pays required. The insurance side of the vaccine, Dr. Oaklander summed up, can be “a bit of a shlep.”

Combine that insurance shlep with high retail prices and the former supply problems, and you can understand the rather modest Zostavax numbers thus far: As of 2011, only about 16 percent of Americans over 60 had gotten the shingles vaccine.

Quantifying your fear

Back to my rash as I was getting off the plane: I entered a state of high vigilance. I knew that if you do get shingles, you need to get it treated promptly. Quick anti-viral drugs can cut the risk of post-herpetic neuralgia in half, Dr. Oaklander said.

But was this even shingles? I turned to Dr. Google — but mainly the CDC, of course — and focused in on the descriptions. Shingles occurs most commonly on the torso, but only on one side of the torso. My spots were only on my left side. So imagine my joy the next day when I found an itchy red spot on my right wrist. “Thank goodness,” I said, “it may just be plane-borne bed-bugs!”

When you are so scared of something that the prospect of bedbugs is a joyful alternative…

That clinched it for me. When you are so scared of something that the prospect of bedbugs is a joyful alternative, you need to do everything you can to avoid that something. But I can imagine other people’s calculations coming out very differently: If you have lower risk and less fear, if you’d rather wait until more is known, if money is tighter.

Thankfully, our family finances are solid these days. And the vaccines are easy to find; Dr. Bresnitz says “close to 50 percent of our vaccine is given in pharmacies.” So if our doctors approve, we’ll just put “shingles vaccine” on the Costco list next to the paper towels.

It feels like a funny financial tradeoff. Instead of, say, a splurge of an evening of dinner and a play, we’ll lower our risk of prolonged agony. Not exactly a fun way to spend money. But it makes sense in a  grown-up, bad-things-really-happen way. And at least my next bout of stress may carry less of a risk of life-shattering complications.

Readers, how are you thinking about this decision? If you decided to get the vaccine, was it a hassle? For further background:

CDC: Shingles vaccine: What you need to know

National Institute on Aging: Shingles

Merck: Shinglesinfo.com, including a really daunting but informative photo gallery, and another chart on how the shingles risk rises with age.

Postscript to friends and neighbors: It does not appear to have been bedbugs either — unless it was perhaps one tired bug that quickly died off.

 

  • art vandelay

    43 yo male here i was stricken with it on my eyelid. i thought i had gotten something in it from weed whacking earlier in the week. then on friday it felt like a sty or stopped up gland even though ive never had one on my eyelid. my eye became progressively droopier until monday it was nearly fully shut. and there was a pronounced rash on my forehead and then i pretty much knew this was going to be a real pisser. luckily i was able to get an appt with opthamologist on monday and he confirmed it . they say its caused by stress and or a weak immune system but i havent been sick in years and im apretty laid back dude. i did have the gout about a year and a half earlier and that was about the fifth level of dantes inferno that was the most excruciating pain ive ever experienced .they say its comperable to trying to pass a kidney stone. maybe my body was still stressed from the gout. im on valrex but my eyes still swollen shut but its just the 4th day i cant deal with this for 2-4 weeks but i might have to

  • Milton Walker

    Regarding “good citizenship”: shingles actually is infectious, in the form of chicken pox, transmissible to people who have neither had chicken pox nor been vaccinated for chicken pox.

  • CC

    I am 44 and also just returned from a vacation to Asia with a mild case of shingles (and a cold which wiped out my immunity). I assumed it was from burning the work candle at both ends before the trip and playing the amazing race while on vacation to cram everything in to one trip! I know that you can’t “catch” shingles, but don’t you think it is odd that others have had the same thing happen after vacation? There is quite an irony there! I considered the vaccine when I was in the process of getting a dozen others for a trip to Africa a few years back but thought myself too young to worry about it just yet. It appears I was wrong. Thank goodness I have a mild case and got on the anti-virals the next day. (If that photo above is of you, that does not look mild! Ouch!)

    I see that there are studies that show that what was once thought to be a one-time occurrence now recurs in about 5% of people and of those, most had a severe bout or it lasted 30 days or longer.

    Is there any hard evidence that shows that the vaccine will prevent a recurrence now that I have had it once?

    I’m not the biggest fan of vaccines (and my insurance won’t cover it) but I too would get it to prevent the devastating potential side effects/disorders that you and PattiD mention.

    Cheers

  • Henry

    Well, 64 here, in Australia. Not sure whether the vaccine is available here yet, though I think it may be if sought out via GP. First episode 6~7 weeks ago. misdiagnosed as bites, as no rash, rather red lumps like bad insect/spider bites.

    Thought it had gone. Probably because of a subsequent stressor about 2 weeks ago, now have it back. 2nd time on neck, cleared up as straight to Dr for antivirals, but reappearance in similar dermatome area is unresponsive. Am fervently hoping it will subside again in coming week or 2. But can only hope, try and get good nutrition/sleep, and continue lysine as a possible prophylactic measure.

    I wonder how many sarcastic sceptics here have actually had it. My bet is 0%.

  • 10s_linger

    Merck stock could drop or they could decrease advertising are the absolute scariest.

  • Pox Vobiscum

    Heard the story just now on the radio and might have missed the beginning. I am 60 and my doctor suggested I get a shingles vaccination shot. BUT, they did not offer it at the very large hospital where she works! She suggested I go to CVS. So I started calling CVS pharmacies only to find out that only one area CVS offers the shot, because they have to have special refrigerator to store the vaccine. How serious can the medical community be about the shingles vaccine if a large conglomerate hospital near Fenway Park doesn’t even offer it onsite.

  • Lawrence

    I just love these scare tactics. Show a horrible eruption, and scare people into getting a vaccine so the drug companies can make more money. The article even assures us that it will be covered by insurance.

    And OH MY GOD! It can even lead to suicide!!!

    Just be honest and tell us it’s just an advertisement for the drug companies.

  • http://hammernews.com/ hammermann

    Duh, did you have an editor? WHAT IS Post Herpatic Neuralgia, exactly?????? After reading a long article, I have to Google it to find out what you are talking about? Wikipedia- “Postherpetic neuralgia (PHN) is a nerve pain due to damage caused by the varicella zoster virus. Typically, the neuralgia is confined to a dermatomic area of the skin and follows an outbreak of herpes zoster (HZ, commonly known as shingles) in that same dermatomic area. The neuralgia typically begins when the HZ vesicles have crusted over and begun to heal, but it can begin in the absence of HZ, in which case zoster sine herpete is presumed (see Herpes zoster). These signals may convey excruciating pain, and may persist or recur for months, years or for life.
    —In the United States each year approximately 1,000,000 individuals
    develop herpes zoster. Of those individuals approximately 20%, or
    200,000 individuals, develop postherpetic neuralgia.
    —Less than 10 percent of people younger than 60 develop postherpetic
    neuralgia after a bout of HZ, while about 40 percent of people older
    than 60 do.

    OK. Be afraid.

  • MarySnc

    My mother got shingles at the age of 67, and her life was forever changed. She was a smoker, and she had to be in the hospital for two weeks, without cigarettes of course. She was also on a “nerve pill” of some sort, and for some reason her doctor cut that dosage in half while she was in the hospital. A perfect storm in the world of stress for bringing about shingles. When I took her home from the hospital, she wanted to go outside to get some sunshine. It was a few minutes before she commented on an itching, burning pain on her shoulder, and I saw the red bumps and wrongly, wrongly assumed something had bitten her. I put Benadryl on her, then left that afternoon to drive 100 miles to my own home. Long story short, it was a terrible case of shingles, which went undiagnosed, and which did indeed cause postherpetic neuralgia. Mother had had three heart attacks and two by-pass surgeries. She was amazingly strong and resilient. But shingles put her in the darkest, most painful place, beyond anything she could have imagined. I took her to a number of different pain clinics over the next two years, seeking some sort of relief, including injections to kill the nerves causing the pain. I got the vaccine the year it came out, at age 55. Because it was new, Blue Cross had not set up a proper method of payment, and I paid out of pocket $225, though they did reimburse me later that year. I would not have cared if it cost ten times that amount–after I saw what my mother went through, I would have done anything to prevent that from happening to me. My husband got the shot also. If you’ve ever known anyone who lived with this kind of pain, you would know you would never want to experience it yourself.

  • HollandMom

    I got shingles on the left side of my face and thru my left eye at age forty after several major stressful events: death of my mother, father’s severe suicide attempt, and my first baby in the house. I feel the stress needs to be major and rather chronic to activate the shingles virus. Vacation stress won’t due it, in my opinion. The pain was bad but what was worse was the exhaustion from the illness. I got sick in early December and did not feel my energy starting to come back until the end of April. I would be exhausted just by taking a shower and getting ready to go somewhere. I had to quit a new job that I really liked because it was impossible for me to commute and work. My left eye was damaged, but I’m thankful that I still have it. The financial cost to my family from my having shingles was enormous. Get the shot; it’s an insurance policy for anyone who’s income is needed in a family.

  • di

    Aren’t there studies emerging that suggest possible strong correlations between herpes simplex, Shingles and Alzheimers?

  • wdarling

    I’m 38 and had a really horrible case of chickenpox at age 9 – down the throat, bottoms of my feet, the works. Still have marks all over the place, especially on my face. I keep thinking, will this one day make for a really horrible case of shingles?

  • Trena

    OK, OK, I’m going to ask my dr. about it. Thanks for this warning article!

  • http://www.facebook.com/profile.php?id=1360202544 Amy Vinroot Wilson

    What about children who have had the chicken pox vaccine? Will they be able to contract shingles in the future? I’ve asked a couple of physicians, and they did not know the answer.

    • Milton Walker

      Since shingles comes from re-activation of dormant chicken pox viruses from an actual case of chicken pox, it would not make sense (in light of my 2 years of medical school) to be able to get shingles if previously vaccinated for chicken pox. And if the chicken pox vaccine failed or wore off (I have no idea about its effectiveness, but I assume it’s pretty darned good), the kid would be getting CHICKEN POX, not shingles. You can’t get shingles without first having chicken pox.

  • http://www.facebook.com/omgitsaclaire Claire Woerner

    I’m only 22 but I really want to get the vaccine because I had shingles at 13 and it was miserable. I had to hold my arm us so it wouldn’t touch my side and the medicine they gave me for it made me sick. So far, though, I’m ineligible because of my age and the fact that I’ve already had it once. I still have about 80 years left on this planet and I’d love to live it without the risk of getting shingles again.

  • VictoriaF

    I got shingles at 52. My first indication was the feeling of having been kicked in my right side by a mule. Dreadful deep muscle ache/pain. That on a Friday. On Sunday, the rash and blisters appeared, and by the time I got to the doctor with my self-diagnosis on Monday, he groused at me for failure to phone the office. And tell him what? Kicked by mule? Sadly, I was a neuropathy sufferer. I can have teeth drilled and filled with no anesthesia, but shingles did me in. The neuropathy lasted for just over a year — I refused all pain meds early on, but I was not very nice to live with for quite a while. Get the shot.

  • hammondb3

    What’s scary is that we MAY be turning a simple childhood illness into an epidemic of adult onset of shingles.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563790/

    And whats even scarier than that is a simplistic NPR article like this that does not even bring up the medical/moral issue of the widespread use of this vaccine. What about the poor old lady down the street who can’t afford the vax? She never benefits from the natural boost of direct exposure to the virus in a sick child because guess what? Kids don’t get chicken pox anymore, they are vaccinated. Oh, and there immunity is only temporary, not life long. That is why my family rejoiced when our daughter got chicken pox. We are not anti-vax. I would consider the vax if I were pushing 60. But we as a society are currently running an experiment, and it is not without risk.

  • m miller

    I had shingles on my scalp, brow, eye and nose 5 years ago, and I get repeated bouts of it as I suffer with post herpetic neuralgia. Even morphine doesn’t relieve the constant pain. I’ve lost almost all the vision in my right eye, I no longer drive, and I can no longer rread “regular” print as in books and newspapers. I kept putting off getting the shot until it was too late. Don’t do what I did.

  • Anne Salamon

    I am 54 and developed shingles last fall. But mine was not a classic case of skin itching on one side, I had “muscle involvement”, which only 5% shingles pts get. Starting on my left collarbone, then “rolling” down my left arm, I would have muscle pain. Over the course of a few days, the episodes increased in frequency and “recruited” across to my right collarbone, and the pain “roll” down both arms (how can this be shingles if it’s bilateral?). It became the THE MOST EXCRUCIATING PAIN I have every experienced! Like my arms being fed through an old fashioned ringer. It was all I could do to just breath through the pain, with tears whelling up in my eyes, as the 45 seconds or so lasted an eternity. Then my arms, mainly my left, felt like I had done 200 pushups and were worthless, just hang at my sides for about 5 minutes as the muscles “recupperated”. It got so that when I felt an episode coming on, I would start to sob. The doc didn’t see any blisters (at that time) on my back and thought maybe I had a pinched nerve. Finally saw a patch of large blisters that had coalesced just center of my left should blade and got started on antiviral med. The pain became localized to just my left side but still had episodes for at least a week, up to 40 a day. That was six months ago. Nerve testing my left arm has showed my ulner nerve was “slow” but PHN persists. My left arm and hand were almost non-functional due to loss of muscle tone and coordination. I’ve done physcial therapy to regain use of both (imagine not even being able to pick up a paperclip without thinking it through or having the muscle tone to hold on to it). That I can type again is a miracle. But I am still on gabapentin (have managed to bring my dose down some) and my shoulder blade and arm will “ache” if I don’t get enough sleep or don’t take enough gabapentin. Opiod drugs like Lortab do not touch the pain as this is neuropathic pain.

    GET THE VACCINE!! I would not wish the above on my worst enemy! I am a pharmacist– vaccines are kept under strict storage conditions in fridges w/ alarms on them and the temps documented daily. A person can always rationalize why NOT to do something, but I was a walking ad to get the vaccine, even if it reduces your risk by only 50%.

  • ablmf

    I had shingles once. It took one week for me to recover. I don’t want anyone on this world to going through that.

  • Elana

    My 89 year old mom, who had taken the shingles vaccine in the last 5 years, got shingles. The pain from the rash was lessened, probably by the vaccine, but the viral infection itself, sickened her to the extent that she died 3 months later. The vaccine is not a miracle cure.

  • Nicoline Smits

    My mother had a pretty bad case of shingles when she was in her late forties, which is where I’m at now, but I can’t seem to persuade anybody to let me have the vaccine, even if I pay for it myself and the FDA has approved it for people over 50 (which is not as far off as 60). I’m terrified of getting it. I know a guy who had it and it nearly cost him the sight in one eye.

  • Marjie Heyman

    Shingles is not necessarily an ‘older person’s’ disease. I first contracted shingles at the young age of 13, and spent two weeks out of school, in intense pain if even a light cotton t-shirt touched the sores that had erupted on my mid-section. Itching, burning pain, and aching pain were constant companions (it’s hard to bend over, when you hit those sores). After it was over, I had naively thought that I would be immune to any future breakouts. Imagine my surprise at 55, when I started noticing bumps emerging on my neck, and then appear above my eye within 24 hours of its first appearance. Luckily, my husband recognized what it was, and I was able to obtain anti-viral medication that drastically cut the duration of the outbreak (and pain). The medication, I might add, was very expensive (but nothing like the $2000 of the writer below – that’s awful!), but worth it to me. OTOH, the shingles vaccine is about $100 where I live, and I would encourage ANYONE who has had chickenpox to talk with their physician about getting the vaccine.

    • A New Yorker

      I was wondering about this, too. I had chicken pox as a child, and shingles a couple of years ago, as an adult (far from being a senior). So shingles CAN recur, even after you’ve already had it? Yes, the sharp, stabbing pain made it impossible to do anything else; I treated it with anti-viral Rx, but did not get a vaccine…

  • Sarah

    I had shingles when I was 20! I had it for several weeks before I went to the doctor, because it started only as intense neck and shoulder pain. I thought I had a pinched nerve, and I only went to the doctor when the rash started across my neck and my shoulder. It was definitely one of the most painful things I’ve gone through. The dr. was surprised somebody so young could have gotten such a severe case. Granted, I hadn’t been taking care of my body very well, and was under some pretty heavy stress with my family. But now the likelihood of me ever getting it again (even when I’m older) is very slim.

  • Ananams

    Your article hit home.. I’m turning 48 this week and I found the telltale welts on the right side of my torso following weekends of college visits. At first, I thought they were from bed bugs as we’ve stayed in many hotels. I visited the doctor the same day and was misdiagnosed because my rash covered more than one dermatome. Two nights later, I was awakened by back pain similar to a pulled muscle, but not exactly in the same location. I went to urgent care in the morning and was sent home with a prescription for Valacyclovir. So far, the occasional ibuprofen manages whatever discomfort I feel.

    I was very little television so I was not up on the availability of vaccines, but (as a single professional mother of three) the inability to support and raise my children would cost substantially more, financially and otherwise, than a vaccine.

  • SallyW

    I had shingles (age 56) on my face – forehead, around eye. The pain was excruciating and i hope i don’t ever relive it. Fortunately sent to Mass Eye & Ear because of potential for vision impact.

    The cost of Valtrex (no generics at that time) was about $12/pill, 3X/day, renewable every 10 days. i was on it for more than a month because of shingles location. that’s a lot more than the cost of the vaccine, which i couldn’t have then because of my age.

    it’s been 5 years and i still have scars. I also have occasional pain – stinging – which is benign compared to the pain at the time.

    I’ve had shingles. There is evidence to believe it won’t return. The exception is when it first occurs in an upper quadrant of the face/head. That’s where mine was. I am considering the vaccine and will get in an instant if someone can assure me it means shingles won’t recur.

    • HollandMom

      My shingles (age 40) began on my forehead. Where did you read or hear that shingles can reoccur if the original outbreak began on the upper quadrant of the face? Thanks.

      • SallyW

        My primary doctor at Mass Eye & Ear told me that once you get shingles, that’s it, except when it occurs where mine did. Then there is a chance it will return, either in the same place or elsewhere.
        The post-herpetic pain & itching is one thing but a full outbreak would be a bummer. The pain I felt was like no other and i hope never to experience it again.

        • HollandMom

          Thanks,Sally, excellent info that I did not know. I’m gonna manage my stress and stay healthy. Shingles was hell.

  • margarita

    What’s up with the title of this piece? Is Merck writing these for NPR? Come on.

  • Disqus

    My uncle got shingles at about age 65 many years ago. He ended up in the hospital. When an older sibling got them a few years ago, I got the shingles shot. My insurance paid for it, but I would have paid for it out of pocket if necessary.

  • B. Stone

    $185 for an evening out, or the vaccine? How tactless.

    P.S. get the vaccine.

    • Carey Goldberg

      Point taken, and text adjusted. (And BTW, I by no means meant to imply that $185 is a typical night out for me…) And clearly there is a huge issue of health-care fairness here: As complex a decision as this might be, if you’re not covered for the vaccine and can’t afford it out of pocket, you don’t have the option of making it…(Carey)

  • BKC

    I have had recurring *active* shingles since 1995. I’m not talking about post-herpetic pain, although I’ve got that, too. It’s like a nightmare version of the movie “Groundhog’s Day” where I start to get the hallmark “tingle/itch” that precedes an attack and then, within a few hours, a full- fledged outbreak of shingles.

    My first attack (outbreak, episode, flare-up, rash, occurrence, eruption….) happened when I was 43 years old and had just moved into a new house with my new husband. It was small (a little larger than a half-dollar) and right smack-dab in the middle of my lower back. It itched, it burned, it ached, it went away. I thought it was a fairly severe spider bite. But when, about 6 weeks later, it returned in the exact same spot I began to wonder what kind of spider keeps returning to bite the same person’s backside in the same spot — again and again. I asked my doctor about it and he said, confidently, “young lady, you’ve got shingles!” I went home with an Rx for a cream to rub on it and advice to bathe in a special “soothing” oatmeal bath (a terrible idea, in my experience), along with admonitions not to scratch it. Eighteen years later, I am always armed with antiviral pills (over $200 for 7 days worth without insurance) and an antiviral cream (Zovirax, at over $350 a tube without insurance) but nothing keeps the virus from coming back again, and again, and again.

    It started out on my lower back almost squarely in the middle and just above the sacrum. It comes back to that same spot again and again sometimes a little more to the left and other times a bit more to the right (or higher or lower) and sometimes right on top of where it broke out the last time. I’ve also had what I call “outliers” which are scattered (or sometimes even single) blisters far from the usual – for me – location sometimes down my right arm, sometimes scattered on my left arm. I’ve had them on my neck, on my scalp (under my hair) in my eyes and on my feet. So the exclusionary description “only on one side of the torso” is only true when it’s true. The writer of the above article may, indeed, have had shingles lesions that were “atypical.”

    I wish I were only talking about post-herpetic pain, but I’m not: it’s a full-fledged outbreak each and every time. I took a drug called “Neurontin” for a period of time and that reduced the post-herpetic pain significantly and resulted in the longest time ever that I remained without even one shingles eruption. But, after several months on Neurontin, my body became sensitive to it and it began to bring on symptoms of it’s own (mostly gastric) and it then stopped working for me. My primary care physician but me on Acyclovir daily for over a year, but the meds were wreaking havoc with my gastro-intestinal system and the attacks were kept at bay for a few months but started up again while I was on the daily antiviral regimen so there seemed to be no real reason to continue. Were the side-effects of the drugs causing so much stress that the drugs themselves caused flare-ups?

    I have consulted many doctors including a dermatologist, a neurologist, an allergist, and even an infectious disease specialist with no solution and no lasting relief. The doctor that was the most knowledgeable about the condition was the infectious disease specialist — but ultimately she could not add anything new or helpful to my treatment options. When I asked her why it keeps coming back (isn’t it supposed to happen once — and then it’s done?) the best she could come up with was “That’s atypical, but it does happen sometimes.” And, just for the sake of clarity: No, I don’t have AIDS. But I have had CFIDS/ME (Chronic Fatigue Immune Dysfunction Syndrome, aka Myalgic Encephalomyelitis) since 1984 – just short of 30 years.

    I know that stress makes a new outbreak more likely, but my body seems to have re-defined stress as “anything even remotely out of the ordinary — including happy events.” So, travel to anywhere brings it on, as does any medical procedure (invasive or non-invasive, major or minor), exercise, birth of a new grandchild, spring cleaning, paying taxes, anything more than the most basic shopping expedition… you get the idea. All this may give you the idea that I am a highly-stressed, anxious individual, but I am not. Were you to meet me you would most likely think I’m one of the most mellow people you’ve encountered: unintended insults roll over me without even a blink (as do most *intended* insults which are, fortunately, few and far between). Traffic jams and extended waiting in doctor’s offices tend to pass by me unnoticed – I listen to my MP3 player (audiobooks, usually), read a magazine, watch people… I make Buddha look like hyperactive. in

    I wish I knew what I could do to make the shingles outbreaks stop, but I am losing hope that anything new will come along to help.

  • LisleV

    Two and a half years ago my wife suggested that I, at age 63, should think about the shingles vaccine. I assured her I would do so after things wound down from an overseas trip that I was hectically planning for that summer. While overseas I then came down with a case of shingles across my left cheek, on my tongue and inside my ear. I experienced a sharp stinging sensation and a deep annoying tingling much more intense and painful than the nerve pain you feel when you bang your elbow (“funny bone”) that kept me awake for two days until I could get proper pain meds that only dulled the pain. I had to postpone my travels and return to the US in great discomfort on the flight home. The intense pain lasted for weeks, a dull tingling pain lingered for more than a year, and to this day part of my tongue and cheek still have not recovered full feeling. Get the vaccine… as soon as you can.

  • bly

    “a deeply personal decision — ideally, in consultation with your doctor”

    Right. Just make sure it isn’t a skin specialist, a dermatologist, in other words. Here in North Carolina I’ve had dermatologists (yes, more than one) tell me they won’t prescribe the shingles vaccine. We have to visit a general practitioner to get that done. I’ve also had it explained as a turf war between specialists and GPs which, if true, would be disgusting.

    The fact that we have to visit a doctor for this vaccine is ridiculous. We don’t have to see a doctor for a flu vaccine and whatever peripheral issues that are medically pertinent with the shingles vaccine can be covered by a pharmacist. I know, because the GP I finally saw in order to get a shingles vaccine prescription merely said, “Sure,” wrote it out, and gave it to me.

    Cost is another absurd (just wrong!) issue. My shot cost me $225 at the doctor’s office. What part of that was profit, I can’t say. My office visit was another $100. Fifty million Americans aren’t insured and among those who are can be counted more millions whose insurance deductibles or co-pays are so high that they can’t afford this simple vaccine.

    And wasn’t it SO cute how Dr. Oaklander referred to the battle you’ll have to wage with your insurance company as “a bit of a shlep.”? No, doctor, a schlep is merely tedious or difficult. Wrangling with insurance companies is infuriating. They’re designed to profit by attrition. This is just one more example of a third-world health care system so broken that it literally cannot be fixed.

    • Lulu

      I did not need a doctor to “prescribe” the shingles vaccine, I just went to the clinic inside my local grocery store. Since I didn’t have insurance at the time I paid in cash; $250 well spent to greatly reduce the risk of getting a very painful disease that, if contracted, would cost much more to treat in the long run. I work part-time for a non-profit (no insurance and no sick days) so if I get sick I’m screwed! I will gladly pay for a booster shot in ten years if necessary.

      • johntod

        You are incorrect by saying you didn’t need a doctor to get the shot, you did need either a doctor, or nurse practitioner or a physician assistant to get the shot prescribed. By going to the clinic in the back of a store, you were seen by one of the above, who prescribed the vaccine.

        • Lulu

          Right, because that’s the same as making an appointment with a primary care physician, paying a co-pay and then paying out of pocket for the vaccine as well. My point was, even though it’s expensive, the vaccine is worth it, and easy enough to obtain without going through the hassle of going to a “doctor”.

        • http://www.facebook.com/people/Larry-Banal/100003497752117 Larry Banal

          in wa state you can get the vaccine at any pharmacy without a perscription

    • DJPJ

      $225 dollars and $100? Why are you even concerned about the cost? This is something important like your health. Think of all the non-health related items you purchased for $225 or $100. I’m tired of people complaining of the cost of health care. Health care is expensive, people. It’s a privilege in this country. But if you have the money to buy anything else, you should always spend your money on healthcare first.

  • Bill

    Great Job NPR, Now your just as reliable as fox news. Stop with the fear tactics to get everyone vaccinated.

    • MarySnc

      NPR is actually doing a great service in relaying the facts about the devastatingly painful and lasting effects of shingles. May you never get them, but why not lower your chances anyway and get the vaccine? Why pillory NPR and accuse it of scare tactics? At the very worst, you learned something from this article. Not everything you read will pertain to you personally, but the facts relayed in this article are accurate. What you choose to do with factual information is up to you.

  • tuckarella

    I got shingles at 31 after the stress of getting married, starting a new job and buying a house all at the same time. Three weeks of the new job missed and two years of chronic pain. Shingles is no joke. Even after several rock climbing injuries and childbirth, nothing else has compared to that pain!

  • hammondb3

    Unbelievably naive reporting on the efficacy of said vaccine. Wow:)

    Don’t google it. Seriously, don’t.

  • judy foreman

    Great job, Carey. As someone who is just finishing up writing a book on chronic pain, I applaud your highlighting this easy, if not cheap, way to gain significant protection against post-herpetic neuralgia. Judy Foreman, judy@judyforeman.com

  • Banannamom

    I have had post-herpatic itching & pain for six years now. (I was not a candidate for the vaccine b/c I have a medical condition that makes taking live vaccine untenable.) But I tell anyone (over 50) I meet to get the vaccine!

  • David C. Holzman

    I didn’t need the specter of plane-born bed bugs. I got my shingles vaccine two years ago at age 57. One friend–an MD–had been made miserable for months in her mid-to-late 40s by shingles; another for months in his early 60s. (I don’t know if these were garden variety cases or post-herpetic neuralgia, or somewhere in between.) I didn’t care about the $300; preventing something like this, where there’s a pretty high risk, is a no-brainer. You can call it a very expensive vaccine, or a cheap insurance policy. For me it was the latter.

    I don’t know why I never had to pay, but fwiw, I have Harvard Pilgrim, and I get my healthcare at Beth Israel Deaconess.

    Regarding the possibility of the vaccine’s protection tapering off in 10 years: I will be sure to get my antibody titer taken a few years before that.

  • PattiD

    You stated in your article that the chickenpox cells lie dormant around the spine, but that is not always true. There is another life-altering complication of shingles people need to be made aware of called Ramsey Hunt Syndrome which results when chickenpox cells exist in your face. I contracted shingles five years ago when I was 48 years old. I first noticed bumps on my tongue and then inside my right cheek (oddly enough on my trip home from a vacation as you did). When I awoke the next morning, the right side of my face was paralyzed – I thought I had had a stroke. My amazing PCP diagnosed me almost immediately and put me on steroids but I lost 100% of the hearing in my right ear, struggled with balance issues for many months and have regained, and will ever regain, only about 60% mobility in my face. I would urge everyone to get the shingles vaccine if they can – there is no way to know how the disease will present in each individual and a 50% chance of avoiding Ramsey Hunt or the illness you described is certainly worthwhile.

    • beenthere

      PattiD: 15 years ago ( age 40) I too had shingles on my face, on the right side of my forehead, down around my eye and nose and my upper cheek. Fortunately I was not nearly as severely affected as you. The choice my Doctor gave was either to pay $2000 for anti-virals -10 days worth- that my insurance company wouldn’t pay for or wait and end up in hospital with a possible brain infection- yes brain infection via my eye- and probably lose the eye – two grand well spent. When I am stressed my face will still light up, ache, throb, itch. No one should should wait , or join the hysterical anti-vacine unless you enjoy suffering. By the way shingles is contagious when still in the blister stage

    • Terry Nakamura

      My mother, at age 88 was struck with Shingles. She had been to “frugal” to have a vaccine. We struggled with her unrelenting pain for 10 months. She had been totally independent until the day Shingles struck. She was never independent again, needed either hospital care on an IV drip of morphine to get the pain under control, then nursing home to move to tens machine and oral meds and finally home care with us but many days and night she would cry with the pain and we would be back at the clinic asking for help again. People are fools if they don’t try to avoid it or minimize it with a simple shot. She died and while they said it was related to her heart, I will always know that Shingles killed her after a 10 month journey of pain that reduced her to a person we barely knew.

    • Kenneth Izumi

      Varicella-zoster virus (VZV) also known as human herpesvirus 3 (HHV3) may latently infect neurons and persist for a lifetime as an incomplete virus with its DNA genome in the neuronal cell nucleus. Episodically, it may reactivate to lytic infection and produce virus particles that assemble en route along the axon where they may emerge at the ending and infect cells such as keratinocytes. Lytic virus replication damages those cells, producing the skin lesions, and incites an inflammatory immune response that provokes pain.

  • idler

    here’s why I have, so far, decided against the vaccine based on random reading; probably some of these reasons are misinformed:
    - low effectiveness ~50%
    - unknown duration of effectiveness, maybe only a few years
    - expensive, ~$300 ( zostavax is essentially just multiple doses of chickenpox vaccine; why so high priced?)
    - vaccine requires lower storage temperature than most vaccines so good chance that some providers aren’t that careful since a separate refrigerator is needed
    - anecdotes from folks that get shingles or other side effects immediately following vaccination
    - doctor suggests I , as a 75 year old, should get it but he really can’t offer a persuasive argument

    • Henny G.

      here’s why I have, decided to get the vaccine based on random reading;
      probably some of these reasons are misinformed:
      - High effectiveness ~50%
      - Possible effectiveness of multiple years
      - Only $300
      - Vaccine requires lower storage temperature than most vaccines so good chance that providers are careful since a separate refrigerator is needed
      - anecdotes from folks that get shingles or other side effects from not getting vaccination
      - Doctor, a medical professional, suggests I, as a 75 year old, should get it.(but hey, what do they know right?! I mean, I read some things…)