When I was only 10 years old I was diagnosed with Juvenile Rheumatoid Arthritis and was immediately started on medication to help manage the symptoms. These day’s medications seem to be all around us and most are classified as a safe and normal way to manage pain, discomfort, illness and disease. We get the slightest bit sick and immediately head to the doctors to be prescribed medications that we may not know anything about and without the slightest bit of hesitation agree to consume them because the doctor labels it as safe. As a 10 year old child I obviously knew next to nothing about medications except that they are supposed to make you better.
My name is Ellen Barnes from Melbourne Australia and this is my story of how I am conquering DRESS Syndrome.
It all started in November 2014, I had just finished my last exam in my first year of university to be a Nurse/Midwife. I headed to my Rheumatologist for an appointment to start new treatment for my Arthritis. We went through what medication I had tried and what had worked and not worked in the past and after much thought she decided that Sulfasalazine should work best for me. I was really keen to try this new medication and finally control my symptoms, what I didn’t know was that taking this medication would lead to a series of events that would have a massive impact on my life. She went through all the adverse reactions I should be aware of and gave me a pathology slip to get bloods done in a few weeks to check everything was going ok.
A month past and I was loving this new medication, for the first time in a long time my pain was managed and I felt arthritis free. In the first week of December 2014 my family had a bit of a hard time with one of our close family members ending up in hospital, resulting in me having to stay away from home to help my family out. I was so flat out trying to make sure everyone else was ok and taken care of that I hadn’t even noticed that I was developing a slight rash all over my stomach. Once I had a chance to stop and look at the rash properly I remembered that one of the side effects of sulfasalazine was in fact a rash. I approached my mum and showed her my rash and it didn’t take us long to dismiss it and think that it was probably just heat rash. I had been taking the medication for a month now surely it couldn’t be related.
A couple of weeks passed and the rash was still there, it was still only small and I was still thinking it was just due to all the stress of what had been going on. The next week my friend returned from overseas and before I went to work I caught up with her for a coffee. The entire time I kept itching my arms and I could feel myself getting itchier and itchier, I then realized the rash had suddenly spread all down my arms and back. I hate calling in sick to work so I showed up and worked as if nothing was wrong but after being there for an hour or so I started to feel very unwell, I felt dizzy, sick and could not stop itching, the rash was now all down my legs as well. I immediately left and headed straight to the doctors, my regular GP was on holidays so I sought the opinion of another. I sat down and before he could say a word I explained that I had started taking a medication 5 or so weeks ago and I that I thought I was having an allergic reaction, he dismissed my opinion and told me I had Scarlett Fever. He sent me home with antihistamines and antibiotics and told me it would go away in about a week. As a student nurse we are told to always listen to our patients as nobody knows them better than themselves, well this doctor didn’t care for my opinion and that mistake almost cost me my life.
Christmas Day came around and by this stage I was day 3 on antibiotics, the rash hadn’t fully gone away but it was nowhere near as bad as it was. 2 days after Christmas and I was off to enjoy a week long holiday with some friends up at the Murray River. The week came to an end when I started to feel very unwell again, I made an appointment with my GP for the following morning and we started the 6 hour journey home. I slept soundly that night, it’s almost as though my body knew it had to save its energy for what was about to come.
The following morning (January 2nd) I woke up and began to get ready for my medical appointment, I got up looked in the mirror and was shocked at what I saw. My face had started to swell up and my rash had come back, worse than ever. Instead of heading to the doctors I headed straight for the emergency department. Blood test after blood test was performed and after 7 hours of being there I was sent home, the diagnosis, a simple allergic reaction that should go away within two days. They gave me a whole bunch of medications and steroids and assured me that the rash should only start to get better. Mum questioned them non-stop, we knew they were wrong but they needed the bed so we needed to leave. The next day (my younger sisters 18th birthday) I was even worse. The rash had spread to everywhere and it was turning a purple color, back to ED I go. They did a skin biopsy and said the same thing as the day before “it’s just an allergic reaction and it will start to go away very soon.” The next day I was miserable, I felt so alone as these doctors seemed to be doing nothing to help me and I knew I was only getting worse. I got online and did some research and came across 2 syndromes that pretty much described my symptoms to a tee, Stevens-Johnson Syndrome and DRESS Syndrome, neither of them looked like they had a good outcome. I started to become quite distressed at the fact they both said you would need to be hospitalized and I didn’t like the idea of that.
The next morning I was woken up by my partner so we could get to my GP check-up appointment. I had a soaring temperature and it took both my partner and my mums efforts to get me out of bed. Whilst trying to explain to the GP what had been occurring I became very short of breath and distressed and she sent me straight to the hospital. My pulse and temperature was through the roof and I was beginning to swell up like a massive balloon. It didn’t take long for the hospital to finally admit me and begin investigations as to what was actually going on. That afternoon, on Monday January 4rd 2015, they told me I had DRESS Syndrome (Drug reaction with eosinophilia and systemic symptoms). They explained that it was a type of adverse drug reaction whereby you get a rash, a fever and inflammation of internal organs such as your liver, heart and kidneys.
The next few days were the hardest of my life, I continued to grow in size and swell up and the rash continued to spread until you could no longer recognize me. My pulse remained well above 100 BPM and my temperature was very up and down. I was hallucinating and to top it off my aunty was having brain surgery and I hated that I couldn’t be there to support her. On the Wednesday morning I was at my lowest point and I will never forget it. I woke up early that morning and my temperature was extremely high and I felt sick so sick and yuck. I got up to go to the bathroom and immediately started to lose sight and lost my balance, I promptly buzzed for the nurse. She kept begging me to eat something but I could barely keep my eyes open, I was so dizzy and felt so sick. She took my blood pressure and it was 55/35 (normal BP is about 120/90), as a student nurse I saw that BP and knew something was seriously wrong. I don’t remember much else from that morning, I felt like I slept the entire morning away, what I do know is that everything could only go up from that point. I continued to spend a few more days in hospital, I spent majority of the day hoping that I would walk into the bathroom and recognize myself but I couldn’t.
My visitors would walk into my room and go to turn back out because they couldn’t even recognize me past the swollen face and rash that had taken over my entire body. I felt as though I couldn’t have a proper conversation with the nurses, I felt as though they couldn’t really get to know me as I usually looked like a completely different person, not this beast that I had become. I didn’t feel like me and I didn’t want anyone to see me in that way. I spent majority of the day wrapped in wet bandages trying to get the ointments to soak through my skin and trying not to pee myself whilst I laid there for 2 hours at a time. The rash got so bad that I was beginning to go crazy, the itchiness, the burning sensation, I hated it and just wanted to rip my skin off. I had tried all the drugs, to try and stop the itching but nothing worked. It got so bad that one night I started screaming and crying, I was losing my mind and at that I was starting to think the only way for this to end was if I died. I have never ever thought like this in my life, but in that exact point in time nothing was worth it, I just wanted it to end.
A couple of day later I was discharged, the swelling started to go down and so did the rash but very slowly. Little did I know that this was still only the beginning of a long journey to come.
I spent the next few days at home pretty much asleep and very drowsy from all the antihistamines and sleeping tablets. I had a lot of phone calls and people asking if they could come and visit but I was just too embarrassed about the way I looked. I spent the next two weeks just sitting at home feeling sorry for myself and trying to recover. About 3 weeks after being out of hospital I began to look like myself again and started to go back to my normal routine but I still didn’t feel like myself. I was constantly tired and having to take naps to make it through the day, I was very sluggish and everyone just thought I was being lazy. I understand why, on the outside I looked fine but nobody but me understood what was going on inside. The combination of the medication I was on and the ordeal I had been through began to make me very depressed. I no longer wanted to get out of bed in the morning, I made no effort to go out and socialize and I was in a constant battle with myself. I began to have panic attacks for no apparent reason, generally before work or before leaving the house. This went on for about 11 months until I hit a really low dose of steroids and began to be able to think more clearly again.
It has now been 14 months since I was hospitalized with DRESS Syndrome. I wish I could say I have completely recovered and moved on but I can’t. I am still on steroids which puts me at risk of developing Diabetes, I still get rashes very randomly and I am still so scared that this disease will haunt me forever. I continue to see dermatologists who have no idea what to do with me, nor can they give me a reason as to why I am still experiencing some of the symptoms of DRESS. The doctors here in Melbourne have no idea, there is just not enough research behind DRESS Syndrome. I have to stay away from many medications now, if I take any that I am allergic to, the reaction will be much worse and last time was bad enough.
I can honestly say I have never appreciated my body as much as I do now. I know people will read this and think I am just being dramatic, I understand that as I used to think that to. I know there is worse things that could have happened but this experience was traumatic for me and is for others who suffer it.
DRESS Syndrome stands for drug reaction with eosinophilia and systemic symptoms, it is rare and potentially life threatening with a mortality rate of 10%. Systemic involvement includes hematologic, hepatic, renal, pulmonary, cardiac, neurologic, gastrointestinal and endocrine abnormalities. I was lucky, some days it doesn’t seem like it, but I was. I survived and didn’t turn into that 10% statistic.