What We’ve Learned About DRESS Syndrome: Insights From the Register Your Case of DRESS Survey
- Tasha Tolliver
- 9 minutes ago
- 7 min read
Most people have never heard of DRESS Syndrome. Yet for those who experience it, the impact is life-changing.
DRESS stands for Drug Reaction with Eosinophilia and Systemic Symptoms. It is a severe, delayed reaction to a medication. The immune system has an abnormal response, leading to widespread inflammation. This reaction can cause rash, fever, and damage to organs such as the liver, kidneys, lungs, and heart.
Though considered uncommon — DRESS Syndrome is estimated to affect 1 in 1,000 to 1 in 10,000 people exposed to certain high-risk drugs — it can be life-threatening. Recovery often takes months or longer, and for some, the effects last for years.
Despite its seriousness, DRESS remains under-recognized, under-researched, and underfunded, with few dedicated studies and no universally accepted diagnostic or treatment guidelines. While experts have published consensus recommendations, formal guidance is still lacking. Recent cuts to U.S. research budgets have made advancing progress even more difficult, leaving patients and clinicians without clear answers.
To help address this, in 2019, the DRESS Syndrome Foundation launched the Register Your Case of DRESS survey.
Today, it has become one of the largest collections of patient-reported DRESS experiences worldwide, providing valuable insights that would otherwise be missing. These patient voices are building the foundation for future research and better care.
Quickly go to a section:
Section 1: What the Data Shows
What The Data Shows
Now, we’re sharing some of what we’ve learned so far. These findings represent hundreds of patients and caregivers who chose to document their experiences. Your voices are shaping awareness, guiding research, and reminding every patient they are not alone.
Because this registry reflects patient experiences, we’ve been able to capture unique perspectives not always reflected in other registries. In addition to information about demographics, drugs, and treatments, we’ve also uncovered details around relapses, complications, and the emotional toll that comes after the critical event.
Please note: Patient information is private, and we never share personally identifiable information without explicit permission.
1. Who shared their story?
Over 800 DRESS Syndrome patients and loved ones have contributed to the registry, representing a wide range of ages, genders, and racial/ethnic backgrounds. Participants come from across the U.S. and around the world, reminding us that DRESS is a global issue.
Most patients identify as female: In our survey, 81% identify as female compared to 19% male. Most medical studies report a narrower gap — roughly an even split between men and women. This difference in our survey may reflect that women are more likely to find and participate in patient-support networks like ours.
Average age falls in midlife: Responses span across all age groups, from children and young adults to older adults. The most strongly represented age range is between 35 – 54 years old. This finding shows that DRESS affects people across the lifespan but often strikes in the middle decades of life — when family, career, and health responsibilities are significant.
“I was in the middle of raising my kids and working full time when DRESS turned my life upside down. It felt like everything was put on hold overnight.”
Most people survive DRESS, but the condition remains life-threatening: The vast majority of respondents survived DRESS — 98%. This rate is lower than the ~10% mortality rate often cited in medical literature. This discrepancy may reflect that survivors are more likely to participate in the registry than loved-ones of deceased DRESS patients. Even so, the reported deaths (2%) emphasize the seriousness of DRESS Syndrome and need for continued research into outcomes.
“It’s terrifying to know that a medicine I trusted to heal me was the one that almost took my life.”
2. How many patients were hospitalized?
Hospitalized: Most people (84%) were hospitalized during their reaction, and 88% say they were formally diagnosed with DRESS by a physician.The rate of hospitalization emphasizes the severity of this condition.
“I went to the ER three times before anyone admitted me. Each time I was sent home until things got so bad I could barely stand.”
Not hospitalized: About 16% were not hospitalized. This may reflect cases caught earlier or managed differently. There’s also a chance that due to the extreme likelihood of hospitalization with this syndrome, that some of these cases may reflect misdiagnoses. These outcomes highlight the variability in how DRESS Syndrome is identified and treated.
“My reaction was never treated in the hospital. I only saw my doctor as an outpatient.”
3. What drugs trigger DRESS Syndrome?
Collectively, patients report over 45 unique drugs associated with their reactions. These range from
antibiotics to antiepileptic drugs and beyond. In some cases, the exact culprit is not identified, particularly when patients were on several medications during their illness.
Five drugs are most often reported — a pattern that has stayed steady over time — but respondents also note many other medications as possible culprits. This emphasizes the wide range of drugs that can trigger DRESS Syndrome and the importance of continued vigilance when prescribing or starting new treatments. It also confirms what medical studies show about the most common triggers and surfaces less common drugs that might otherwise be overlooked.
Most commonly reported drugs
Antibiotics: vancomycin, trimethoprim-sulfamethoxazole (Bactrim/Septra), minocycline
Antiepileptic medications: lamotrigine (Lamictal), carbamazepine (Tegretol)
Anti-gout medication: allopurinol
Frequently mentioned beyond the Top 5:
Other antibiotics: amoxicillin, azithromycin, ceftriaxone, doxycycline
Other antiepileptics: phenytoin (Dilantin), valproate/valproic acid, levetiracetam (Keppra)
NSAIDs: ibuprofen, naproxen
Immunosuppressants/autoimmune drugs: sulfasalazine, hydroxychloroquine
Others noted less often: antivirals (acyclovir), biologics (rarely), and miscellaneous agents reported by several patients
4. What treatments do patients receive?
Steroids remain the most common treatment for DRESS Syndrome. But they’re a blunt tool — powerful yet risky — especially when patients must remain on them for months.
Most patients report systemic steroids (85%) with many also using topical steroids (60%). Some received cyclosporine, IVIG, or antivirals (often in combination with steroids) — while a few say they had no treatment beyond stopping the drug.
As shown here, there's an apparent reliance on steroids —and an urgent need for clearer treatment guidelines. Such guidelines can only come from coordinated, large-scale studies across multiple medical centers.
5. What’s the timeline for recovery?
Recovery is different for everyone. Some people complete treatment and stabilize soon after their initial reaction. For many, recovery continues for months — and in some cases, new complications arise even years later. Patients describe setbacks with relapse of symptoms, difficulties finding doctors familiar with DRESS, and in some cases new reactions to medications unrelated to their original trigger drug.
Patients shared:
“I’ve seen so many specialists, but none can explain what’s happening — it’s confusing and exhausting.
“The hardest part is that most doctors I see don’t know what DRESS is. I feel like I’m the one explaining it to them.”
“No longer on steroids, but I continue to face complications that no one seems to recognize.”
6. What’s the rate of relapse and recurrence?
Recovery isn’t always linear. For some patients, symptoms ease and then flare up again. This is considered a relapse. Relapse often happens while treatment is still ongoing, especially when steroids or other medications are being tapered.
“Every time the doctors lowered my steroids, the rash and swelling came back worse. It felt like I was starting over.”
In other cases, DRESS appears to return after treatment has ended and recovery seemed complete. This is called a recurrence — essentially, a second episode.
“I thought I was finally past it, but months later the symptoms returned out of nowhere. It was terrifying to go through it again.”
Both relapse and recurrence can be discouraging setbacks, sometimes requiring patients to restart or extend treatment. They highlight the unpredictability of DRESS Syndrome, even after the initial reaction improves.
42% experienced relapse
14% reported that DRESS returned after treatment
33% said they had no relapse
7. What long-term complications can develop?
DRESS Syndrome often leaves a lasting impact. Months to years after the initial reaction, many patients report developing long-term health complications. Sometimes, these challenges remain with patients for life.
Patients most frequently reported:
Autoimmune conditions and thyroid disorders (such as hypothyroidism, Hashimoto’s, Graves’ disease, or type 1 diabetes)
Skin symptoms (ongoing rash, itching, pigmentation changes, or hair loss)
Endocrine complications (including steroid-induced diabetes, adrenal insufficiency, or other hormone imbalances)
Organ complications involving the liver, kidneys, lungs, or heart.
Other challenges include:
Persistent fatigue
Neurologic issues such as neuropathy, seizures, or brain fog
Other autoimmune diseases like lupus, Crohn’s/IBD, or psoriasis
Reproductive hormone problems such as PCOS, endometriosis, or hyperprolactinemia
“I beat DRESS, but now I live with thyroid disease.”
“Since DRESS, I’ve developed diabetes and my energy has never returned.”
“I have ongoing liver issues that doctors still monitor years later.”
These voices are helping researchers uncover patterns that will guide better treatments, earlier interventions, and even prevention.
8. What’s the emotional toll of having DRESS?
The emotional effects of DRESS Syndrome are very real, and patients often describe struggling with them. Yet the psychological impact is often overlooked in medical care. Through this registry, patients are making those experiences visible — sharing how anxiety, depression, PTSD, and fear of future medications shape life after DRESS.
“I’m scared every time a new medication is prescribed. Even when I need it, I hesitate to take it.”
“Diagnosed with chronic pain, migraines, trauma and in therapy for depression.”
From Patient Voices to Research Partnerships
The DRESS Syndrome registry is more than a survey — it’s a bridge. Because patients choose to report their cases, the Foundation has been able to connect participants with active research. One such study is the DRESS Syndrome Survivor Study led by the Center for Drug Safety and Immunology (CDSI) at Vanderbilt University Medical Center.
This Survivor project is assembling one of the largest DRESS data and DNA biobanks in the world. Its purpose is to:
Identify genetic risk factors for developing DRESS Syndrome
Understand long-term complications
Improve prevention, diagnosis, and treatment strategies
Why This Registry Matters
Every registered case of DRESS Syndrome counts. The more cases reported, the stronger the evidence base becomes. This insight helps researchers and patient advocates push for standardized treatment guidelines and more funding for DRESS and related conditions.
Patient-reported data is already:
Helping clinicians see patterns
Strengthening advocacy for better diagnosis and treatment guidelines
Raising awareness about long-term challenges
Most importantly: Behind every statistic is a person and a story — of enduring DRESS, of its lasting impact, and of the courage it takes for patients or loved ones to share their experience. That choice is powerful.
How You Can Help
Register your case of DRESS Syndrome. The registry continues to grow — every new patient voice adds to our collective understanding.
Share this blog to raise awareness among patients, clinicians, and researchers.
Stay connected and build community — find support groups online and consider attending our DRESS Support Meetups.
DRESS Syndrome remains one of the most difficult conditions to diagnose and manage. But patient voices are reshaping that reality — raising awareness, guiding research, and helping to build the groundwork for better care.