My Shingles Story: How It Happened and What I Did in Response

I was put on biologic medicine to treat ankylosing spondylitis a little over a year ago. I started the biweekly injections and slathered myself in hand sanitizer everywhere I went. Living in New York City, I’m surprised I wasn’t sicker more often!

Everyone warned me that biologics were the gateway to getting super sick (because they suppress the immune system), so it was almost as though I was waiting for an infection.

To be clear, biologics don’t cause illness or infection — but they can make you more vulnerable.

About three months into treatment (after seven or eight injections), I went to my swimming class and noticed that my ribs hurt — a lot. I thought, Did I pull something? Did I scrape my rib cage against the pool’s wall or something? 

After class, I went home feeling pretty exhausted and weak. I noticed that my rib cage was swollen, but I thought maybe I had costochondritis, which AS patients often get. If you’re lucky enough to not have had it, it’s inflammation where the upper ribs join the cartilage of the sternum. Fun!

The next morning, I woke up and my ribs hurt even worse. I planned to get an X-ray, but I emailed my rheumatologist first. She asked me for a picture of my ribs. Odd, I thought. You can’t see a broken bone through the skin.

Sure enough, when I went to take the picture, I noticed a sprinkling of light red dots. This was at 10 a.m. She told me she thought I had shingles and immediately prescribed me Valtrex (valacyclovir hydrochloride).

By 3 p.m., the rash had spread all the way around my body to my back. By 9 p.m., my entire rib cage was on fire. She nailed it.

I was 32 years old. I always thought shingles were something you got when you were, well, older. However, before starting biologic treatment, I did a bunch of research and saw that it is a possibility at a younger age — especially when you’re immunocompromised. It’s caused by the varicella-zoster virus, which also causes chickenpox (which I had when I was 2).

So, how does it happen? According to the Mayo Clinic, “After you’ve had chickenpox, the virus lies inactive in nerve tissue near your spinal cord and brain. Years later, the virus may reactivate as shingles.”

Shingles is no joke, friends. The rash itself wasn’t too terrible, but the horrific nerve pain made my head spin. It felt, and I remember thinking this very clearly, like someone burning, punching, and cutting me at the same time. It was as if I were being electrocuted and nothing could stop the random zaps. At one moment in the depths of pain, I thought, “I won’t survive if this lasts more than a few days.” Luckily, the horrific pain lasted only about three or four days. I’ve been known to be melodramatic, but it truly isn’t fun!

Valtrex — or whatever antiviral medicine you’re prescribed — is a necessity. If you suspect you have shingles and are immunocompromised, get help immediately. Any delay in treatment can cause postherpetic neuralgia, which results in lasting pain from damaged nerve fibers. It may last weeks, months, or even years.

To treat the rash, I cleaned it with tea tree oil and witch hazel — which was both gross and sort of refreshing. The rash can become infected, which you want to avoid at all costs. I also took 1,000 mg of Lysine daily, which has been found to promote healing.

If you’re on biologics, or if you’re about to start them, make sure you’re in the know about potential risks. Luckily, my shingles experience wasn’t so bad — but others have had it worse. If you suspect even the slightest symptom, advocate for yourself and check it out.

***

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.