My name is Chelsea and I was diagnosed in September, 2017, at the age of 22, with DRESS Syndrome secondary to Carbamazepine (Tegretol). Every day is a struggle but I'm so thankful I lived to tell the tale. Some, very sadly aren't so lucky. This is my story...

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From the time I started on Carbamazepine (It was prescribed to me off-label for apparent mood/mental health benefits), it took six weeks for all hell to break loose. 

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After four weeks on the drug, I was feeling fatigued and generally a little under the weather. I saw my GP; he ran some tests which showed my eosinophil count and liver enzymes were significantly raised, and my liver function had decreased markedly with no apparent known cause. I didn't seem to be suffering from any contagious illness, so I kept going to work. I was a casual member of staff working in the health care sector and I didn't have the time or money to take leave. 

 

About two weeks later, a co-worker pointed out that I had a rash developing on the insides of my elbows. By the end of my shift, I was covered in a rash. I developed a fever. I felt awful. I went to the doctor and they ordered more tests, and told me to come back the next day.  I didn't make it back. By the next morning - I was driven to the emergency department at my local hospital because of the worsening rash and the beginnings of the oedema. Things went downhill pretty quickly from there. 

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Early Stages of DRESS - Prior to Diagnosis:

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While hospitalized, I remember experiencing intense pain and headaches, extreme itching due to the rash, and, being diagnosed with a bladder infection and lymphandenopathy.  The main organs that were affected were my liver, kidneys and skin. Liver enzymes were markedly raised, kidneys were failing and eosinophils were through the roof. Thyroid and heart issues didn't occur until after the acute phase of my DRESS. The primary treatment I received in the hospital was systemic steroids. I continued on them for over a year. 

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Evolution Of Facial Swelling Prior To DRESS Diagnosis and Systemic Steroid Treatment:

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Resolution of Symptoms After Beginning Steroid Treatment:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

As time progressed and the steroid dose was slowly tapered post-acute admission (I was on systemic steroids for just over a year afterwards).

 

I continued to have constant skin flare ups, developed cellulitis in both legs, I shed all of my skin multiple times and after the three month post-diagnosis mark, my thyroid became briefly affected and I lost about 85% of my hair.

 

Additionally, since diagnosis I've had to take daily antihistamines, was prescribed a new sleep medication and two heart medications, none of which I had to take pre-DRESS. I've also had scares with reacting to the annual flu vaccine, but being a healthcare worker, I'm still being immunised annually but I monitor closely for adverse effects. During the initial steroid taper and even now, skin flare ups still occur. Any new medication presents itself with fear of a resurgence of the DRESS and another adverse reaction, so like many others I remain hypervigilant, to a degree that I feel many who don't know (much) about DRESS quite understand.

 

The amount of dismissal I've (and many others have) faced from medical professionals in the years after diagnosis has been alarming and honestly not okay. It took far too long for my heart problems to be taken seriously and actually followed up on, not just being brushed off as anxiety. I wish this wasn't the norm. It makes me sad and so frustrated that the after effects can be dismissed so easily. DRESS in many cases doesn't just disappear; we need to be heard. 

 

Mentally, living with this illness was, and still is an extremely difficult battle. I remember while in hospital feeling so scared and frustrated, feeling helpless and like I was powerless against it.”It was an extremely harrowing and distressing experience.

 

Long-term Complications Experienced After Accute DRESS Episode:

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DRESS is still a widely misunderstood illness and unfortunately not enough is known about it by many health professionals. I have to explain DRESS and the impacts it has had (and continues to have) on me and my health to almost every health professional I meet, and while as a health professional myself I love to help educate others, it's tricky. It took two years for my heart problems post-DRESS to be recognised and I firmly believe the drug reaction has been the cause of some of my health struggles since. 

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However as we know, every sufferer of DRESS has a different symptom and timeline trajectory; their own unique story to tell. No two individuals have the same DRESS experience, but this was, is, mine.

 

Thank you for giving me the opportunity to share my story.

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