Shingles, also called herpes zoster or zoster, is caused by the varicella zoster virus, which also causes chickenpox, according to the Centers for Disease Control and Prevention (CDC). It only occurs in those who have had chickenpox — the virus stays dormant in the body and can flare up as shingles many years later. Shingles usually manifests as a painful skin rash that can be accompanied by blisters, most often on one side of the torso but also on other parts of the body, such as the face and in and around the eye, notes the CDC. At 16, Henderson had a second round of shingles, and this time it was severe. “I was in incredible pain,” Henderson says, adding that her immune system was compromised, too. Nabeel Khan, MD, a gastroenterologist with the University of Pennsylvania Perelman School of Medicine in Philadelphia, explains that when a person has Crohn’s, an immune dysregulation can put you at an increased risk for herpes zoster infection. The shingles vaccine, also called Shingrix or recombinant zoster vaccine, is approved for adults ages 50 years old and older, as well as for adults ages 18 years old and older who are or will be at increased risk of herpes zoster due to immunodeficiency or immunosuppression caused by disease or therapy, according to the CDC. But as Dr. Khan’s research shows, many people living with inflammatory bowel disease (IBD) don’t get vaccinated for shingles. In a study published in February 2019 in the journal Inflammatory Bowel Diseases, Khan and colleagues looked at shingles vaccine rates for people with Crohn’s disease. Researchers studied database records for nearly 19,000 within the Veterans Affairs Healthcare System who had IBD and were eligible to get the vaccine. Results showed that only 21 percent of those with IBD got the shingles vaccine once they were old enough, which accounted for roughly 4,000 people in the cohort group. “It’s not well-known that there’s a risk of shingles with IBD,” Khan says. “And the vaccine used to be contraindicated (not advised) if people were on certain medications.” In Henderson’s case, she asked her doctors about the vaccine after she had a third episode of shingles, which came 18 years after her last bout. “I thought I was over shingles, since I’m not on steroids or any biologics, but it happened again,” she says. “I don’t know why.” At 34 years old, she didn’t fit the typical age recommendation for the vaccine (at the time), but since she was prone to shingles, her doctors told her to get it.

When to Get the Vaccine

If you have IBD, you should talk to your doctor as soon as possible about getting the shingles vaccine, regardless of how old you are. “The first time you get a Crohn’s diagnosis, you need to be aware you’re at increased risk for shingles, and also influenza and pneumococcal disease,” Khan says. “Talk to your primary care doctor. Herpes zoster could lead to long-term complications, so all Crohn’s patients should ask their doctor if they qualify for this vaccine.” Henderson suggests staying in frequent communication with your doctors, and to be sure to understand the risks, facts, and options available. “If you’re at risk and your physician recommends the vaccine, then work out when to do it,” she says. “It’s incredibly important to know your options and do anything you can to prevent shingles.” The Shingrix vaccine is given in two doses that are spaced two to six months apart, according to the CDC. Common side effects are soreness, redness, and swelling in the local area where you were given the shot. But if you’re allergic to any of the vaccine ingredients, or if you’ve tested negative for the varicella zoster virus, then the vaccine is not recommended. If you test negative for the virus, then you will need to get the chickenpox vaccine instead. If you’re pregnant or breastfeeding, then wait to get the shingles vaccine.

Crucial Window to Get Treatment for Shingles

If you have Crohn’s and end up getting shingles, there are options to help treat it and reduce the severity of symptoms. But there’s a critical window in which the antiviral medication needs to be taken to effectively slow down the progress of shingles, and to lower your chances of complications. “If you notice a rash, getting treatment within the first three days will help,” Khan says. “Know what the signs are, and speak to your primary care physician immediately if you spot the rash. Many people don’t recognize the symptoms, and by the time they go to their doctor, it’s actually past the window of treatment efficacy.”