Earlier this month, an Illinois woman named Lily woke up with a sore on her lip, thinking it was just from chewing in her sleep.
By bedtime, however, her lip had significantly swollen.
After a visit to the hospital, she found out that her condition was a serious complication from a medication she’d used for the past decade—one that millions of Americans also take.
“I know I’m very lucky,” Lily said on TikTok. “Looking back, I should have taken it more seriously from the start. I really learned my lesson.”
How it started
Lily later reflected that she should have rushed to the ER as soon as the swelling began.
“Swelling around your mouth and face should never be ignored,” she cautioned. It can escalate quickly and block your airways, making it potentially life-threatening.
The next morning, her swelling was worse, prompting her mom to insist that she go to the ER.
Even before she officially entered triage, a nurse asked if she was on the blood pressure medication lisinopril. Upon confirming this, the nurse rushed her to a bed.
“That’s when it hit me—this was serious,” she recalled.
She discovered that she had angioedema, which is a sudden swelling in the lips and mouth triggered by the lisinopril.
Lily received treatment with an IV that included steroids, Benadryl, and Pepcid. Although this isn’t technically an allergic reaction, these medications are utilized for treating ACE-inhibitor angioedema. She spent about 12 hours in the hospital for observation.
The following day, the swelling had reduced significantly, but she mentioned that she still had some lingering swelling around her jaw and bruises inside her lips.
“All things considered, I got pretty lucky,” Lily said. “I’m grateful they knew what was wrong right away, and that I got treated promptly.”
How it’s going
Lily had been taking the medication for ten years before experiencing a reaction, which isn’t uncommon for angioedema related to ACE inhibitors. Such reactions can emerge months or even years after starting the medication.
ACE inhibitors like lisinopril can lead to a buildup of a chemical called bradykinin, resulting in dangerous swelling.
Forty million people use ACE inhibitors for treating high blood pressure and heart issues. While only about 0.1 to 0.7% of patients develop angioedema, it’s seen more frequently in Black patients and individuals over 65.
A significant portion—between 20 to 40%—of ER visits for angioedema are attributed to ACE inhibitors. Generally, stopping the medication is enough to halt the reaction, but serious cases may require ICU treatment or intubation.
“They warned me to keep an eye on things for about a week, saying if it happens again, it’ll likely be worse,” Lily noted. “That’s pretty alarmingly since I was already at a critical level without being critical.”
More than 40% of patients may experience angioedema again within a month, even after discontinuing the medication.
Understandably, Lily has decided not to take lisinopril again. She was also provided with an Epipen, Benadryl, and prednisone, a type of steroid.
