I was diagnosed with DRESS syndrome on August 22, 2018 (two years ago as I write this). My initial symptoms began on August 5th, which included swollen lymph nodes all over my body, severe headaches, edema (swelling), prolonged fever of 104 degrees for five days, nausea, and vomiting, skin rash, and sloughing. My onset was five days after being prescribed relafen (a nonsteroidal anti-inflammatory drug) to decrease inflammation as I prepared for my third foot surgery.
We were given three misdiagnoses due to how the symptoms presented at the time: 1) ambiguous viral infection 2) exfoliative dermatitis, and 3) Stevens-Johnson Syndrome (SJS). We were released twice from two different ER visits despite the last diagnosis of SJS. The ER doctor advised me to take ibuprofen and find a dermatologist in the morning. Despite our disclosure of this new medication, there was never a consideration by these medical teams that Relafen could be linked to my illness.
Fortunately, my husband Josh saved my life by putting together this connection early and advised me to discontinue Relafen immediately (Relafen had been prescribed for a painful tendon dislocation and tear). This simple act prevented any long-term organ damage. I am lucky to have a husband that has been in the medical field for 15 years and is now an ICU nurse (his decision to work in the ICU was a direct result of our desperation to understand what was happening and the helplessness that he/we felt throughout our DRESS experience). I couldn’t be more proud of Josh’s medical knowledge, thorough assessment, and sound judgement. I appreciate his careful monitoring, documentation of my health from the onset, and his ability to explain my illness to every medical professional that we have since encountered.
Luckily my husband found an incredible dermatologist, Dr. Michelle Mak-Fung from the California Skin Institute who reviewed my misdiagnoses/lab reports and within minutes recommended a biopsy to determine if I had DRESS Syndrome, which she suspected may be the case, and she luckily had treated before. This was a big win.
After the confirmation of DRESS Syndrome, we were highly recommended to return to the last ER immediately to get admitted for a higher steroid dosage, pain management, wound care, and a medical treatment plan. This was the surprise start of an unexpected 10 day stay at two hospitals where Josh and Dr. Mak-Fung had to advocate on my behalf to get the quality of care required. Upon my admittance, it was discovered that my skin was not the only organ compromised; DRESS compromised my nervous system, liver, pancreas, thyroid, eosinophils, and immune system as well.
Thanks to my husband’s advocacy and demands for higher quality care for my excruciating pain I was eventually prescribed a high dosage of solumedrol, a dilaudid PCA (patient-controlled analgesia; a pump and a computerized machine that gives you a drug for pain when you press a button) and wound care.
My progress and recovery has been long. I’ve been advised to never take any NSAIDs (ex. ibuprofen, advil, motrin) again because I am at risk of experiencing a similar severe adverse reaction since they are within the same drug classification as Relafen. Thankfully, my white blood cells, platelets, liver, pancreas, heart rate, and drug-induced hyperthyroidism have since resolved.
My symptoms two years after DRESS are chronic migraines 24/7 (with light and sound sensitivity, nausea, and vomiting), orthostatic intolerance (frequently lightheaded), short-term memory loss, anxiety, ataxia, and joint pain. I have since been to the UCSF dermatology clinic which agreed with Dr. Mak-Fung’s DRESS Syndrome diagnosis and mentioned that they have seen DRESS cases reported weekly. I was on 2,700 mg of gabapentin for over a year and a half, remain on 50 mg of amitriptyline since my diagnosis, tried 15+ medications with little effectiveness, and countless inconclusive labs, CTs, and MRIs.
My current medications are gabapentin, amitriptylyne, phenergan (anti-nausea), midrodrine, naltrexone, quarterly botox monthly Aimovig injections, and SPG (Sphenopalatine ganglion) nerve blocks. My post-DRESS Syndrome medical team is lead by my neurologist and includes my GP, PT, OT, gastroenterologist, endocronologist, and multiple Stanford Hospital Clinics: Headache, Neuroscience, Pain Management, Pain Psychology, and Rheumatology.
I will be forever thankful for Nancy and Tasha. They immediately provided me with hope and encouragement while processing my diagnosis in the hospital. Thanks to the DRESS family and support community, I have created lifelong friendships with DRESS survivors and loved ones. I have learned to set realistic expectations on this unknown and unpredictable recovery. I am in awe of the significant progress made over the last two year since my diagnosis thanks to Nancy, Tasha, Dr. Phillips, and all of world renown doctors that are working relentlessly to research DRESS Syndrome, educate medical professionals, and save more lives. Thank you will never be enough.