Earlier this month, an Illinois woman named Lily woke up with a sore on her lip and thought she’d just been chewing it in her sleep.
By the time she went to bed that night, her entire lip had ballooned.
After going to the hospital, she learned she was actually suffering from a life-threatening complication of medication she’d been on for 10 years — a medication taken by millions of Americans.
“Learning from my doctors … I am very lucky, and it’s not lost on me how lucky I am,” Lily (@tornado_girl12) said on TikTok. “In hindsight, I should’ve taken it more seriously from the very beginning. I learned my lesson from that.”
How it started
In hindsight, Lily says she should have gone to the ER as soon as the swelling began.
“Everybody should take swelling around your mouth [and] face very seriously,” she warned. This is because the swelling could quickly develop into blocking your airways, which can become deadly fast.
By the time she woke up the next day, she was even more swollen. She went to the ER after her mom “begged” her.
Before Lily was officially in triage, her nurse asked if she was taking the blood pressure medication linsinopril. When Lily said she was, the nurse said she’d get a bed immediately.
“That’s when I kind of realized like um… This is serious,” she recounted.
She learned that she had developed angioedema, a sudden swelling, on her lips and mouth that was triggered by her lisinopril.
Lily was given an IV with steroids, Benadryl and Pepcid. Though it’s not an allergic reaction, steroids and allergy meds are used as treatment for ACE-inhibitor angioedema. She stayed in the hospital for about 12 hours for observation.
By the next day, swelling had gone down significantly, but she said she was still swollen a bit around her jaw and bruised inside her lips and jaw.
“Overall, best case scenario for what I had,” Lily said. “I’m very lucky that they knew what it was immediately, and that I got treatment immediately.”
How it’s going
Lily was on the medication for 10 years before she had a reaction. This is not uncommon when it comes to ACE inhibitor-related angioedema — this reaction could happen months or years after starting the medication.
Medications in the same class as lisinopril, called ACE inhibitors, cause a buildup of a chemical called bradykinin. That buildup can cause dangerous, rapid swelling or angioedema.
Forty million people take ACE inhibitors to treat hypertension and heart disease. Only .1-.7% develop angioedema, but it’s more common in Black patients and people over 65.
As much as 20-40% of angioedema ER visits are caused by ACE inhibitor medications. Stopping the medication, which is taken at least once a day, is usually enough to stop the reaction, but some extreme cases require ICU care and even intubation.
“They told me to really be on watch for about a week and if it happens again, it will be worse than last time,” Lily said. “Which is pretty scary because i was about as worse as you could be without becoming critical.”
More than 40% of patients experience another angioedema within a month after their first, even after stopping medication.
Needless to say, Lily won’t take lisinopril again. She was also given an Epipen, benadryl, and prednisone, a steroid.
