I got shingles this past summer. I thought it might be COVID, then maybe human monkeypox. I was on vacation, my doctor couldn’t diagnose it over video, and I got misdiagnosed with an ear infection at a local clinic. To be fair, my face was really swollen, my ear was red and so was my throat. My rash wasn’t very visible. After several painful days, my symptoms worsened and I started getting blisters in my ear and dangerously close to my eye. I finally got a diagnosis and access to antivirals, after which it stopped spreading. In summary: it sucked.
The experience left me with a lot of questions about shingles. Why does it suddenly appear out of the blue? Why does it hurt so much? When does it become dangerous? I thought it only happened to older people, so why am I getting it when I’m just over 40? And why can’t I get vaccinated for it?
What is shingles?
Shingles is a rash that is caused by the varicella zoster virus. Also known as Herpes zoster, this virus is the same herpes virus that causes chicken pox. After someone gets chicken pox, the virus lies dormant in some of their nerve cells. When the virus reactivates, it leads to shingles.
The most common symptoms of shingles are:
- Small blisters. These aren’t as large as those seen in human monkeypox. Rather, they’re the size of a small freckle.
- Itchiness, similar to chicken pox
- Sudden spasms or shocks of pain
- Tingling or numbness
The shingles rash typically appears on one side of the body with small blisters appearing in a stripe or line. The rash isn’t always the first sign that appears: the CDC highlights that pain, itching and tingling can appear before the rash. If you catch these symptoms early enough and start treatment, you may not develop the rash (this happened to fellow SciMom, Alison).
The course of shingles is 3-5 weeks. After the second week, the blisters begin to dry up and scab over. After a few weeks, the scabs clear up.
In my case, the pain started with a few pimple-like spots on my scalp and swelling of my cheeks. After a few days, I started getting blisters in a straight line. Once the blisters formed scabs, the pain continued for as long as the scabs were there. The area around the scabs felt tingly and sensitive like a sunburn, making sleep difficult.
Who gets shingles?
The CDC highlights that about 1 in every 3 people in the US will get shingles. Anyone who has gotten chickenpox can get shingles.
According to the National Institute for Aging, half of shingles cases occur in individuals who are older than 60. According to the CDC, there are one million cases of shingles in the US each year, and 1% of the population over 60 gets shingles each year. The risk of getting shingles and complications from shingles increases dramatically at age 50 and keeps going up each decade. It is possible but uncommon to get shingles more than once.
While the risk of shingles is highest for older adults, the rate of shingles has been gradually increasing over time, especially for adults in their 30s and 40s. While there is speculation that this is due to the addition of the chickenpox vaccine to the childhood vaccination schedule in the US, this trend started before this vaccine was added to the schedule and did not accelerate when the vaccine was added. Thus, the increase in shingles does not appear to be related to the childhood vaccine.
Shingles is caused by reactivation of the varicella virus, often due to a weakened immune system, even if it’s only mildly weakened. This can be due to recent infection with the common cold, increased stress, or other factors. Cancer, HIV, and certain drugs can also increase the risk of shingles (post continues after infographics).
What complications can arise from shingles?
For 10–20% of individuals who get shingles, the pain can persist beyond 90 days. This is known as Post-Herpetic Neuralgia or PHN, which occurs when the nerves around the affected area are damaged due to inflammation. Researchers believe that this inflammation might be due to the virus’ reactivation and migration along the nerves.
Half of patients describe their pain as “horrible” or “excruciating.” This pain can linger from months to years, and is more likely to occur with age. PHN is more likely to affect those whose shingles start with larger rashes or with more pain. The risk of PHN goes down with early treatment.
What’s Ramsay Hunt Syndrome?
In addition to PHN, some patients with shingles complications develop Ramsay Hunt Syndrome, which made headlines recently when pop-singer Justin Bieber opened up about his recent diagnosis. In a video, he showed his fans that his face had been left partially paralyzed, impacting his ear and his speech.
Ramsay Hunt syndrome is a rare complication of shingles characterized by facial paralysis together with painful blisters on the ear, hard palate, or tongue. Many patients do not fully recover, and have lingering pain or permanent hearing loss. It happens when the virus affects the facial nerve near the ear.
What should you do if you have shingles?
To shorten the duration of shingles and to lower the risk of complications, doctors will commonly prescribe antiviral drugs that specifically target herpes viruses. These are not over-the-counter medications and require a prescription. These drugs are most effective if you start treatment early, so getting a diagnosis as soon as possible is critical for the most effective treatment.
However, shingles is often misdiagnosed in children and in young adults, who are usually deemed to be at low risk for contracting shingles. In these populations, the shingles rash is often mistaken for eczema or other skin irritations. There are now laboratory PCR diagnostic tests for shingles that can detect the herpes zoster virus. These tests can help get a quick and definitive diagnosis to start early treatment.
To help relieve the symptoms, like itching and pain, there are over-the-counter options. Baths or lotions can help with the itching, as can cold compresses. I found that over-the-counter painkillers helped manage the pain, and helped me sleep.
The fluid in the shingles blisters will carry the virus, so the open blisters from shingles can spread the virus. This can cause chickenpox in individuals who never had chickenpox, didn’t develop immunity against the chickenpox vaccine, or are immunocompromised. If you have shingles, you can avoid spreading the virus to others by covering up the blisters. Frequent hand-washing and avoiding contact with high-risk individuals (immunocompromised, individuals who are pregnant, etc) will also prevent transmission.
How can you prevent shingles?
Hopefully, by now I have convinced you that shingles sucks. So how can you avoid getting it? First and foremost, avoid getting chickenpox. The best way to do that is to vaccinate kids against chickenpox. But for many of us, that is no longer an option: we were raised at a time when the chickenpox vaccine didn’t exist and our parents had chickenpox parties to ensure that we would get it at an age when the risk of chickenpox complications would be low.
For people like me and all of the others at SciMoms who contracted chickenpox in childhood, the safest and most effective way to prevent shingles is to get vaccinated against it, once we meet the criteria for vaccination.
What is the shingles vaccine?
In the United States, there is only one vaccine currently authorized against shingles: the Shingrix vaccine. Prior to 2020, an additional vaccine (Zostavax), was also approved but is no longer available due to low efficacy.
- Individuals who are 50 years of age or older. Vaccine efficacy is over 90% in this age group. This is not recommended for younger individuals due to lack of testing.
- Immunocompromised individuals who are 19 or older. Vaccine efficacy is 68-91% in this population.
Shingrix is given in 2 doses, separated by 2 to 6 months. It is a recombinant vaccine, meaning that immunity is triggered using a small protein fragment from the virus. This protein fragment is synthetically manufactured, so the vaccine does not contain any living organisms.
The vaccine is recommended even if you’ve already had shingles, received Zostavax or chickenpox vaccine. Individuals who received Zostavax are encouraged to get vaccinated again with Shingrix 5 years after their last Zostavax vaccine. (Note: that the gap between Zostavax and Shingrix varies in other countries and can be as short as 1 year).
Shingrix safety and side effects
Like many other recombinant protein vaccines, Shingrix is safe and effective. The most common side-effects are soreness at the injection site, fatigue, muscle aches, and fever.
After Shingrix’s approval, safety monitoring among millions of doses applied identified an increased risk of Guillaine-Barre syndrome (GBS) in the weeks following the Shingrix vaccine. GBS is a very rare and poorly understood autoimmune disease where one’s own body attacks nerve cells. The risk of GBS following the Shingrix vaccine is 3 per million doses over the typical rate of GBS. However, the risk of complications from shingles greatly outweigh the risk of side effects from the vaccine. In fact, the risk of developing GBS from shingles itself is greater than the risk of developing GBS from the vaccine.
Does COVID increase risk of shingles?
Since the surge of COVID-19 in 2020, there has been speculation of a link between shingles and COVID vaccine. Until recently, it was unknown whether there was truly a link, or if it was merely that people were more aware of symptoms after receiving the COVID vaccine or boosters.
A paper published in 2022 examined more than 2 million individuals who received a COVID vaccine or booster, and compared the incidence of shingles to a control population that received the flu shot. The authors did not find an increased incidence of shingles in the COVID-vaccinated population. Retrospective studies that used historical data have found similar results.
Instead of being linked with COVID vaccination, COVID itself actually seems to be associated with increased risk of shingles. A study published in May 2022 found that individuals aged 50+ diagnosed with COVID were ~15% higher risk of getting shingles than individuals who had never been diagnosed with COVID. This increased risk was greater for individuals who had been hospitalized for COVID.
To be clear, this doesn’t mean that COVID causes shingles. These diseases are caused by two very different viruses. But, as previously mentioned, the herpes zoster virus is reactivated when the immune system is weakened, which is likely to occur with a COVID infection. Whether the COVID vaccine decreases the risk of getting shingles with a COVID infection has not yet been determined.
I want the vaccine. Yesterday.
Given that nearly half of shingles cases happen in individuals who do not qualify for the vaccine, I wish the shingles vaccines were tested for my age range. In hindsight, the location of the blisters, the severity of the pain, and the presence of blisters in my ear and mouth all suggest that my case of shingles had a high risk of complications like loss of eyesight.
Educating individuals who do not yet qualify for the vaccine about shingles and its symptoms can be greatly beneficial. Had I known the symptoms, I could have advocated for myself and asked for a diagnostic test, and I may have gotten earlier access to antivirals.
Like many diseases, it is hard to put numbers or statistics on the impact that shingles has on loss of income and quality of life. Although I was lucky (or perhaps unlucky) to get shingles on vacation, I missed my last opportunity to see my aunt who was immunocompromised. I lost the chance to see my cousin’s newborn. One can seldom predict when or how severely viral diseases will strike, but even in the best of circumstances, it is not convenient.
The shingles vaccine is recommended for individuals who have already had shingles. So on the day after my 50th birthday, you can guess where I’ll be: lining up at the pharmacy for my shingles shot.