A simple prescription taken by 1 million Americans made my skin blister from head to toe – and my organs fail. Doctors say I’m the sickest patient that’s ever lived
Christine Sentz’s ordeal began with a simple prescription, but quickly escalated into a near-death medical crisis.
At the age of just 44, she suddenly developed intense joint pain in her arms and hands.
‘It started out of the blue, basically one day I woke up with severe pain all the way through my arms and my hands,’ she said.
Unsure of the cause, Sentz saw her doctor, who referred her to a rheumatologist. Tests suggested a possible autoimmune disorder, but, as she explains, ‘nothing was certain.’
To ease her symptoms, she was prescribed Sulfasalazine, a disease-modifying antirheumatic drug known for its anti-inflammatory properties. About one million prescriptions are written for the drug, known as the brand name Azulfidine, each year in the US.
That was when everything went downhill.
Sentz, who works as a radiology technologist from Ohio, started the medication in early July 2017. By the end of the month, she had developed a rash across her stomach and a fever. She stopped taking the tablets immediately.
‘The rash had gotten a lot worse,’ she said. ‘So I went to my hospital that I worked at and saw a doctor that I knew and trusted well. He said, “Yep, you’ve got a rash. You were taking a medication. Let’s give you some steroids.”‘
Christine Sentz was blighted by DRESS syndrome, a severe drug-induced reaction that affects the skin, liver, kidneys and other internal organs
The five-day steroid course initially helped, but the relief didn’t last as headaches, back pain and chest pain followed.
Sentz returned to the hospital, was prescribed more steroids, and sent home, but before she could even collect the medication, her symptoms worsened.
‘I went home, went to bed because I had to wait for the pharmacy to open up,’ she said. ‘And by the time I woke up just in that few hours, I was a lot worse.’
Her skin reddened from head to toe, and she passed out several times. Desperate, Sentz contacted the emergency room again, requesting intravenous steroids.
When the doctor saw her condition, he was stunned. ‘This is the worst reaction I have ever seen,’ he told her.
Doctors ran urgent tests but could not pinpoint the cause.
As her condition deteriorated, she was admitted to the hospital and assessed by a dermatologist, who immediately arranged for her transfer to the burn unit at Akron Children’s Hospital.
They suspected Stevens-Johnson syndrome, a rare, blistering skin reaction.
But further testing revealed something even rarer: Sentz’s kidneys and liver were failing.
A skin biopsy confirmed she had Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS syndrome), a potentially fatal reaction to medication.
Sentz suspects that DRESS may be an autoimmune response to certain medications, though research is limited. (Pictured: Sentz on her wedding day)
DRESS syndrome causes a severe rash, swollen lymph nodes, fever and inflammation of internal organs. It typically appears two to six weeks after starting a new drug and affects an estimated one in every 1,000 to 10,000 people, with women at higher risk.
The death rate for DRESS syndrome is approximately ten percent. This can range depending on factors such as the degree of systemic involvement, particularly organ damage, and how quickly the condition is diagnosed and managed.
The underlying causes are poorly understood, but it is thought to involve an abnormal immune response and difficulty metabolizing certain drugs. Mortality is typically due to organ failure, making prompt recognition and intensive care essential.
Sentz didn’t realize how close she came to dying until years later.
She said: ‘My husband didn’t share this with me for a couple of years, he said, “That first night that you were up there, they pulled me aside and they said they didn’t know if you were going to make it through the night.”
‘I didn’t realize that I was that sick. I just knew what it looked like. I knew what was going on on the outside, but I didn’t know what was going on on the inside.’
And when Sentz returned to the hospital to work three months after her ordeal, she said the emergency room doctor told her: ‘You were one of the sickest patients that I’ve sent out of here that’s lived.’
Every day, she had to undergo agonizing baths where doctors debrided her wounds, which covered almost her entire body, removing damaged tissue. She was sewn into a protective suit that made her look, she says, ‘like a mummy.’
Miraculously, the painful blisters spared her face, hands and feet, so she didn’t need skin grafts.
DRESS syndrome causes a severe rash, swollen lymph nodes, fever and inflammation of internal organs. It typically appears two to six weeks after starting a new drug
Sentz’s story underscores both the terrifying severity of DRESS syndrome and the gaps in medical awareness
Sentz credits the burn unit with saving her life. Staff told her they had ‘never used so much bacitracin on any patient that’s ever been in this burn unit.’
Twelve days after being admitted to the burn unit, Sentz was finally able to return home.
Nurses taught her how to change her own dressings, and she continued on a regimen of high-dose steroids and an immunosuppressant normally reserved for transplant patients.
Her recovery moved slowly; each attempt to taper the medication too quickly triggered another painful reaction from her body.
Sentz said it was almost three years before her life slowly, finally, began to feel normal again.
What shocked her most was how little was known about DRESS syndrome.
‘When I was in the burn unit, the nurses would come in and they would say, “I had to Google what you have.”‘ They’d never even heard of it,’ she said.
‘Even when I went back to my own physician, he said, “I don’t even have a code to put in for any type of testing for you because it’s not there. It doesn’t exist.”‘
Although information on the condition has improved slightly in the eight years since her ordeal, Sentz says it remains vastly under-researched.
‘I am seeing more now if I look at it that I am finding more information, but they don’t say that it’s an allergy to the medication,’ she said.
‘It’s just that your body doesn’t process it. So it kind of builds up in your system and they don’t know why it happens.’
Since being in the burn unit, Sentz has undergone two separate surgeries, which led to an ‘all-over body rash’ that she believes was caused by the antibiotics she was prescribed.
Before she went into the surgeries, she explained that she had previously had DRESS syndrome, but the doctors didn’t know anything about the condition.
Today, Sentz advocates for better recognition of the rare health condition, hoping that sharing her experience can save lives
‘That is the first thing that I will mention, is that I’ve had DRESS syndrome. But to a lot of people, that doesn’t really mean anything,’ she said.
‘When I had surgery in April, did the fact that I had DRESS syndrome even mean anything to the anesthesiologist or the surgeon?’
Sentz, now 52, still worries about long-term risks, and the uncertainty surrounding the condition means she fears it could affect others in her family.
The mother-of-two must ensure her children, who are now adults, monitor any medications and reactions closely.
Despite the severity of her illness, Sentz’s organs have made a full recovery and currently show no lasting damage. But the traumatic experience has left her anxious about taking any new medication at all, terrified she could suffer another extreme reaction.
‘I am very careful about what I take,’ she said. ‘There’s going to have to be a good reason.’
