"It was like being wrapped in flaming barbed wire."
That's how Erin Bell, a 48-year-old nutritionist from Peterborough, Ont., describes having shingles.
She got shingles at age 42 and the itchy, unsightly blisters that stretched across her torso faded away relatively quickly, but the nerve pain lasted for more than four months.
"The pain was undeniable and unrelenting," she says.
Joan Robicheau, a 61-year-old Montreal teacher, agrees.
Her case of shingles appeared when she was 50 and started with a sharp jaw pain – which she initially thought was a toothache – but, within hours, she was hospitalized and placed in isolation.
At the time, Ms. Robicheau was recovering from CLL, a form of leukemia, and there was a fear the virus could ravage her immune system and be deadly.
"I was in constant pain for four months, and the pain continued for at least two years," she says. "It took over my whole being."
It is a pain many know all too well.
More than 130,000 Canadians are diagnosed with shingles each year – most of them seniors.
Anyone who has had chickenpox – which is about 90 per cent of people born before 1995 – can develop shingles later in life, and about one-third do. The varicella zoster virus lies dormant for years, or decades, and erupts for reasons that are unclear, usually after age 50.
The pustules on the skin are bad enough, but one in eight of those afflicted with shingles suffer post-herpetic neuralgia, the medical term for lingering and sometimes debilitating nerve pain. The virus can also destroy nerves, causing blindness or deafness and, in rare cases, lead to grave infections such as meningitis and flesh-eating disease. Shingles also increases the risk of heart attack and stroke.
Yet, the misery that befalls so many is largely preventable.
There has been a moderately effective vaccine to prevent shingles on the market for more than a decade.
And now there is a new vaccine that dramatically improves protection – showing itself to be up to 97 per cent effective in large clinical studies.
"This is a game-changer," says Dr. Iris Gorfinkel, a Toronto physician.
The new vaccine, called Shingrix, will be available in Canada in January.
If you can afford it, get it, Dr. Gorfinkel says. "Everyone over 50 should get this vaccine, no question."
But Shingrix is relatively pricey – a $244 list price, plus dispensing fees and vaccination fees that some providers charge.
(By comparison, Zostavax, another shingles vaccine, has a list price of $177.)
The new vaccine also requires two shots, two to six months apart, compared with one for the competitor. And, unless physicians systematically stock the product, consumers will have to purchase the vaccine and carry it to the doctor's office for injection – except in provinces such as British Columbia that allow pharmacists to administer vaccines.
When – or if – provincial health plans will cover the cost of new shingles vaccines has yet to be determined, although some private plans will likely provide coverage, as they do now for the old vaccine.
Currently, only one province, Ontario, provides Zostavax at no charge, but only for people aged 65-70. Uptake has been good, with more than 60 per cent of those eligible getting the vaccine; but in other age groups, the uptake is less than 30 per cent, likely because of the cost barrier.
"What a public health system pays for is complicated," says Dr. Allison McGeer, director of infection control at Mount Sinai Hospital in Toronto. It depends not only on the effectiveness of the vaccine, but on cost-effectiveness, recommendations from expert bodies, on available budgets, on priorities, and on politics.
What is unquestionable, though, is that the new shingles vaccine is remarkably effective.
"Generally speaking, vaccines don't work as well in older populations. The standard explanation is that our immune system weakens over time," Dr. McGeer says. "But in this case, it works better than anyone ever imagined it could."
In a massive clinical trial of 37,000 patients, the Shingrix vaccine produced eye-popping results, especially when compared with data on Zostavax, the only other shingles vaccine on the market:
- In healthy adults aged 50-59, Shingrix reduced the likelihood of shingles by 97 per cent, compared with 70 per cent for Zostavax;
- In the 60-69 age group, it was 97 per cent versus 64 per cent;
- In the 70-79 age group, Shingrix was 91 per cent effective, compared with 41 per cent for Zostavax;
- In the over-80s, it was Shingrix was five times more effective – 91 per cent versus 18 per cent for Zostavax.
The data are noteworthy for a couple of reasons. While the protection afforded by Zostavax appears to fade over time, that does not seem to be the case with Shingrix. (However, researchers caution that the latter has only been studied for four years, while the former has been around for more than a decade.)
More important is how well the new vaccine works in older adults. Almost half of people over the age of 80 will be stricken by shingles and they are significantly more likely to suffer neuralgia.
Until now, there was really nothing they could do to prevent the infection.
"I'm adamant that everyone should get the vaccine," says Sharon Livingstone, a gerontologist who lives in St. George, Ont.
Because she works with seniors, she sees a lot of shingles. So when Zostavax became available back in 2008, she was among the first to get the shot.
Nevertheless, Ms. Livingstone contracted shingles herself four years ago, at age 70, with the rash spreading around her ear and across the neck.
"I've never had so much pain in my life," she says. "I suffer from migraines and I can tell you migraines are a walk in the park compared to shingles."
Ms. Livingstone says that, because recurrences are common (about one in five people who get shingles get it again), she plans to get the new vaccine.
That is the advice of the experts, too. The U.S. Advisory Committee on Immunization Practices (ACIP) recommends that those who have been vaccinated get revaccinated. They also gave Shingrix preferential status, a rare move that identifies it as superior to the competition.
However, the vote on preferential status was a close eight to seven, with dissenters saying they wanted to wait because of the lack of data on effectiveness for minority groups, and the absence of data on real-world effectiveness.
The National Advisory Committee on Immunization (NACI), the Canadian equivalent of ACIP, has not yet made a recommendation on Shingrix, and that has frustrated many, chief among them the manufacturer, GlaxoSmithKline.
Dr. McGeer of Mount Sinai says that frustration is understandable. "NACI has fallen behind, but it's not NACI's fault – the complexity of new vaccines has been increasing and they are under-resourced."
Shingrix is a recombinant vaccine, produced with DNA technology. It also contains adjuvants (a substance added to a vaccine to increase the body's immune response), which may also explain why it is more effective. Unlike the old vaccine, it contains no live virus, and is safe for people who are immune-compromised.
Again, this is important with the elderly population, who tend to have more immune system challenges, and for people with immune-related conditions such as cancer and rheumatoid arthritis, who are at much higher risk of shingles.
Dr. Hance Clarke, medical director of the pain research unit at Toronto General Hospital, says that about 17,000 Canadians a year develop post-herpetic neuralgia, and it is among the most challenging conditions to treat.
"It usually occurs in elderly patients, but some of the most severe cases of shingles I've seen are in young people, aged 19 and 21," he says. "The pain can last for years. It can even last a lifetime."
Dr. Clarke says the key to minimizing symptoms is to get treated early. When people feel the tell-tale stabbing pain, and see a rash begin to develop, they need to be treated with antivirals. But that has to be done within a 72-hour window or it is ineffective.
He also believes vaccination is the best way to prevent shingles – both vaccination of seniors against shingles and vaccination of children against chickenpox.
In fact, with significant uptake of chickenpox vaccine, it is possible that, one day, there will be no more shingles, only the tales of horror recounted by the elders.