"I live a normal life now, but like other DRESS survivors, I'm very careful about what medicines I take."
Augmentin (a combination of amoxicillin and clavulanate potassium) was my friend for sinus infections for over 25 years. Doctors tried other antibiotics to treat these ongoing infections, but none worked as well.
When one doctor suggested that I have a balloon sinuplasty to help relieve my sinuses, I started Augmentin prior to the simple procedure and continued it afterwards for the normal 14-day treatment. Augmentin usually resolved my sinus problems quickly, but this time I felt as if it wasn’t really working as well, so he switched me to the antibiotic, Clindamycin. I started that on a Monday. By Wednesday, I just didn’t feel right. Something was wrong, and the only thing different is that I switched antibiotics. I stopped the Clindamycin and reverted to Augmentin. Thursday morning I noticed my urine was darker than it should be. I didn’t think much more about it, until the next day, Friday, when it was much darker. My first thought was that there was blood in my urine, but, that didn’t make any sense. My wife noticed what she thought was a rash on my chest. I went to Urgent Care, had a urine sample done, and was told to go to the Emergency Room and ask to see someone in infectious diseases.
I arrived at the ER about noon and was taken to a room fairly quickly, surprisingly. The doctors talked to me about what was going on, what medications I was on, the usual questioning. They took blood and another urine sample. The results came back, and they were confused. They looked in my mouth to see if I had lesions or blisters symptomatic of Stevens-Johnson Syndrome (SJS). They asked if my rash “hurt”. No, it did not. There were no blisters and no pain.
They took more blood and more doctors came into the ER room and looked at me. Again, SJS was mentioned. Again, they asked about meds. They asked what I had eaten in the last 36 hours. I told them I was taking Augmentin and then Clindamycin for a few days, before reverting to Augmentin. Some of my blood work was very much out of the norm: total bilirubin, AST, ALT. The doctors said something wasn’t right. Why was my blood work giving strange results? The answer? More blood draws. There were multiple blood tests as well as an abdominal ultrasound, prior to admitting.
By about 5 PM, the doctors still had no clue what was wrong, but they did rule out SJS and then admitted me to the hospital. By this time, my rash had spread over more of my chest and stomach, but I hadn’t noticed all of it. They searched for a room where I could get good care. ICU was full (yes, they were that concerned!) and the next level was the Trauma Care Unit. I got the normal treatment upon arrival: heart monitors, oxygen, IV drip.
Here I am, lying in my hospital bed, a normally healthy 73-year-old male, wondering what was going on. One of the doctors came in and said it may have been a reaction to Augmentin that triggered this. I explained, yet again, that I’d been taking Augmentin for many years without issue, so why would it trigger a reaction. I explained I started feeling funny after taking about 5-6 doses of Clindamycin. They said that a drug wouldn’t cause a reaction that quickly. My smart-ass remark was then why didn’t Augmentin cause a reaction 10, 15 or 20 years ago. That did stump them.
By late in the evening of the first night, I noticed spots (rash) on my arms. This was a new development. It seemed to have spread from my chest to my stomach and my arms. My wife returned to the hospital later that evening with some more comfortable clothing and my CPAP machine, She noticed that my back was also beginning to show a rash. We notified the nurses of this change. About 10 PM the admitting Dr from ER came in and looked at the blood work results. He still had no idea what was causing it. The nurses came in consistently through the night checking my vitals and taking blood samples. Consequently, I didn’t get much sleep that night.
On Saturday, my biggest worry was that the football games I had planned on watching at home would be available on the in-room TV. No such luck. I was hoping that I would be discharged Saturday or the following day, because Sunday was my granddaughter’s 18th birthday. But I was unaware that more of my body had shown signs of the rash. My head, bad as it is, was turning red. My extremities were covered, like a mild sunburn. And look: here comes the nurse with her syringes to take more blood. Every four hours they were drawing blood. I found it a bit difficult to turn over in bed, but manageable. Blood test after blood test found my bilirubin count still very, very high and organ functions very elevated By Saturday evening, I had to use the bed rails to help me turn over in bed. It was that painful. More doctors came in, read my chart, looked at my rash, made some notes, and left. They were still stumped. By this time my family was wondering what was wrong. What weren’t the doctors telling us?
On Sunday, my body was the color of a port wine stain. Head to toe. I could not turn over in bed without intense pain. My body was swollen from head to toe. I looked like the strawberry version of the Sta-Puff marshmallow man. There was talk about transferring me to Portland to the burn unit at Emanuel Hospital (a very good burn unit, I must add), or transferring me to the intensive care unit. They also were concerned about my liver and were considering a liver biopsy to see if that would give them the clues necessary to make a determination of what ailed me. About the only good thing that happened on Sunday was the doctors saying I could have a regular diet.
I could not understand why they couldn’t determine a diagnosis. I had been in the care of the hospital almost 48 hours. They can detect cancer in less time. My family visited me daily. My wife would visit in the morning and evening, going home between visits. She was terrified that she would get a call in the middle of the night…
Sunday evening, my wife was in the room when the hospitalist and a gastroenterologist came in. The hospitalist had determined that I had DRESS after looking at my blood work and conferring with the gastroenterologist. I had never heard of it and had no idea what it was. I do not think they really understood what it was either. In retrospect, I wish a dermatologist had been involved. When I went to my dermatologist a few weeks after this ordeal, he immediately knew what it was and ordered testing the hospital hadn’t. The one test he ordered, but wasn’t done, was HHV-6 testing, which would have been an out of pocket expense to the tune of about $2,500 because it wasn’t covered by my insurance and wasn’t ordered (1) while in hospital and (2) by one of my attending doctors.
I was put on heavy doses of prednisone and God knows what else. Blood draws every 6 hours. The phlebotomists were having difficulty finding veins to draw blood from in my left arm and at one point were pricking my finger to draw blood. Eventually, they had to do an ultrasound of my right arm to find a vein they could tap into and found a deep vein into which they inserted a PICC line. That made the blood draws much easier on me.
On Monday night I had an overheating episode. My body temperature soared to 103.7⁰. The nurse alerted the other nurses and four people entered the room, within about 30 seconds. Cool packs were placed strategically on my body. The room temperature was lowered. I small fan was placed next to my bed. That scared me. I didn’t know what was happening or why. What is this “DRESS” and why did it happen? I must add here that the nursing staff in the Trauma Care Unit was the best I’ve ever encountered. They had about 7-8 nursing staff assigned to 10 rooms, and they knew their stuff, except about DRESS. They got educated quickly.
I stayed in the hospital for six days. During the last 3-4 days, I started shedding the burned skin. I was able to turn over a bit easier. I was able to get up and sit in a chair. That relieved the pressure on my back. However, when I took a shower on about day 4 or 5, it was painful. The shower stream hurt. I almost had it flowing at a heavy drip. Toweling off was an ordeal. Skin just peeled off me. Sometimes in chunks, sometimes flakes. Housekeeping swept the room daily. The bedding had to be changed twice a day.
The days in the hospital gave me a chance to read up on DRESS. I found the DRESS Syndrome organization. I read about Tasha Tolliver and Nancy Szakacsy’s ordeals. I knew I wasn’t alone. I read the stories and testimonies. I began to understand what I was dealing with. I shared as much as I could via the internet with family and friends. I have two nieces that are RNs and they had never heard of such a thing. It intrigued them.
Finally, I was released on a Thursday and went home. I envisioned it would be nice to be able to sleep in my own bed and without blood draws!
My wife remade the bed with my sheet essentially wrapped around me so I wouldn’t spread my skin everywhere. I spent much of the evening in my recliner, with a sheet covering it. I managed to get a decent night’s rest, but in the morning, I had breathing issues. I could breathe but couldn’t take a deep breath. I was taking puffs of Albuterol every 30 minutes with no effect. So, it was back to the ER.
I was admitted again, this time to the pulmonary unit. This time it was addressing fluid retention in my lungs. My blood counts were still high, but down from the previous days. I continued to shed skin. I was able to move about much easier, however. I was on breathing treatments twice a day. The pulmonologists were unique in their delivery of the breathing treatment. Since I was on a CPAP machine, they were able to hook the nebulizer in-line with the CPAP. The first day or so I did it the old-fashioned way, directly by mouth. After that, the CPAP hookup was used. They came in the middle of the night, hooked it up while I was asleep, and came back in 30 minutes and disconnected it. Full night’s sleep!
Every shift change the nursing staff came in to check me. I had to explain to them what DRESS was, since I was now the “expert” on it. I was released on the sixth day of my stay. My lungs had cleared sufficiently for me to go home. I was treated with Prednisone, starting at 100mg and decreasing by 20mg every five days for almost a month.
In the twelve days spent in the hospital, I had 91 tests, 4 of them x-rays. On day three they determined I had DRESS.
In retrospect, the time it took to determine I had DRESS was uncommon. From what I read, it took weeks for some doctors to recognize this syndrome. I was lucky, in more ways than one. My hair did not fall out; it started doing that 30 years ago. I didn’t have recurrences of the rash, although it did remain prevalent for a few months. On the other hand, my liver became cirrhotic, my gallbladder had to be removed, I had a kidney stone, my skin can become irritated and itchy, my vision worsened and breathing issues continued. The only effects I see now, two years out from DRESS, is reddening of my arms, sensitivity to sun, and darkening of the skin when I am cold. It dissipates once I warm up. I live a normal life now, but like other DRESS survivors, I am very careful about what medications I take.