You may know that as a person with T1D, you have a higher risk for some opportunistic infections. Your body can have more trouble fighting off some bacteria, viruses, or fungi that are typically non-issues for someone without an autoimmune condition. 

But did you know that on that list of ‘opportunistic infections’ is a virus that many people have been exposed to early in their lives and can come back at any time afterward?  

This virus is known as shingles. You’ve probably heard of it, but here is a closer look at what you need to know about shingles as a person with T1D. 

Shingles: An Unfamiliar Pain  

It started with deep burning pain in my side one night while I was in bed. Although I don’t have T1D, I do experience more than my fair share of opportunistic infections because of other health conditions. But I had no idea what was coming when I felt that unfamiliar pain. 

I felt especially exhausted and overall rundown — which, for me, is not that unusual due to my other health issues. But the pain at night kept me awake. As I tried to drift in and out of sleep, lying the wrong way would send a sharp new surge of pain that jolted me awake again. 

At first, I thought it was perhaps a kidney infection, but I didn’t have any other symptoms. It was a few more days before I saw blisters. They looked like bug bites at first. Just two. Then three. Then a few more. 

I went to the urgent care to get it checked out. On the way there, it dawned on me that it could be shingles — but didn’t shingles only happen in people who were older or significantly immunocompromised?  

The urgent care doctor took one look at my rash and confirmed my late-coming suspicions. I was sent on my way with a prescription for valacyclovir — a common antiviral medication that works well if taken within the first few days of symptoms — and a pamphlet. I was left to really navigate the rest myself. 

What is shingles? 

Shingles is caused by the varicella-zoster virus — the same virus that causes chickenpox. Even though they are caused by the same virus, they are a bit different.  

Shingles is a reactivation of the virus after you’ve already been exposed to it earlier, usually during childhood. After you are initially exposed to the varicella virus through chickenpox, the virus hangs around in your nerves and spine, and these are areas that avoid our immune system’s defenses. So, once you have a chickenpox infection, you will always have a bit of the varicella virus lying in wait to pounce. 

For many people, the virus doesn’t reactivate until late into adulthood when our immune system starts taking a hit from other illnesses or from advancing age. For other people — even sometimes healthy people — an opportunity arises that makes it a perfect time for the varicella virus to reactivate. 

Say you’re having an especially stressful few weeks at work. You haven’t been sleeping well. Your immune system is busy doing other things, such as fighting off another infection or thinking that your own body is something that needs to be fought — like in T1D and other autoimmune illnesses. Now all this together makes it shingles time! 

The symptoms of shingles are a bit different from chickenpox. The rash and blisters of shingles are generally smaller and more mild — but they pop up along the infected nerve path. So, this may mean you get the rash on your side, as I did. Or this may mean you get it in a really difficult area like the nerves in your face or eyes. 

Another difference between shingles and chickenpox is the amount of pain. Chickenpox blisters are incredibly itchy. Shingles blisters may not be itchy in the same way — because it’s nerve pain. For me, it didn’t really itch at all.   

What be done to treat or prevent shingles?  

Because the shingles virus is just a resurgence of the same virus that causes chickenpox, the varicella vaccine (to prevent chicken pox) is the only certain way to prevent shingles from occurring. If you don’t get the original infection, the virus can’t hide in waiting to pop up later. 

The chickenpox vaccine was added to the recommended child vaccine schedule in 1995 in the United States, despite being used in other parts of the world for years prior.   

If you are like me and you were never given the varicella vaccine before you were exposed to chicken pox as a child, there is a shingles vaccine available called Shingrex. This is a recombinant formula. In other words, this means it is a non-live vaccine and is safe for people who have a weekend immune systems.  

Who should get the shingles vaccine? 

Although the CDC recommends that anyone over age 19 with a compromised immune system get the shingles vaccine, it might not be on your provider’s radar.  

The recommended minimum age for these vaccines is 50 years old. Although we know shingles can occur at any age if you’ve had chickenpox, the Shingrix vaccine has not been studied in people under 50 years old. So, if you’re under that age, you may have some difficulty convincing your provider or your insurer that you need the vaccine.  

Nonetheless, you can initiate that discussion with your doctor and educate yourself in the meantime. Just because for most younger people, a shingles infection is ‘relatively mild’ doesn’t necessarily mean it will be mild for you or that you won’t experience a recurrence that is more severe. After all, the CDC recommends that any adult with a compromised or suppressed immune system should be vaccinated against the varicella virus — even if you’ve already had an episode of shingles! 

This Vaccine Awareness Month, talk to your healthcare provider about your risk for shingles. Shingles can pop up when you least expect it. If you’ve had chicken pox in the past, you have a real risk of shingles, and it’s worth taking precautions.  

As for me, I am still on my journey to get my shingles vaccine. I have plans to get it before the end of summer so that, hopefully, I can avoid another outbreak because I know my relatively mild symptoms this time may not be so mild next time.