This Is My Erythrodermic Story.
Last updated: June 2022
Erythrodermic [eh-REETH-ro-der-mik] psoriasis is a rare type of psoriasis that affects about 2 percent of people living with this chronic condition. It disrupts the body's normal temperature and fluid balance and can lead to shivering episodes and swelling in parts of the body.
This unique psoriasis type affects nearly the entire body and can be life-threatening. Here is my erythrodermic story.
The early symptoms of erythrodermic psoriasis
It was 2003, I was put on a short-term study for a biologic and abruptly taken off. Within a week, my body turned against me.
I'm a person of color, with very dark skin. At this time, I looked like someone had taken boiling hot water and poured it all over my body. I was bright red. My skin was falling off onto my sheets. When I laid down and got back up, you could see the entire outline of my body.
I was in severe pain. The itch was at its worst and very very intense. I would scratch and then cry. The scratching felt so good. It was a different kind of itch and a different kind of relief.
Not getting the help I needed
I visited my primary care physician and told her about my symptoms. My skin was so painful. She directed me to see a dermatologist immediately. I called the doctor who had put me on the biologic and was told to come in right away.
I began to get scared when my body temperature wouldn't regulate. I was going from hot to cold and found myself shivering in the summer heat. I could not stay regulated. Sometimes, it seemed my heart rate would increase. It was all very scary.
The dermatologist examined me and said, “I don’t know what to do for you.” What?! I knew at that moment I was in trouble. I was scared to death. I actually looked like someone out of a horror movie. I couldn't live like this.
The emotional toll of erythrodermic psoriasis
I didn’t want to go to the emergency room. I didn’t think they would have the knowledge to help me since my own dermatologist didn’t know what to do.
My husband took off from work that week and we called as many doctors ask we could. I made 3 appointments within that same week. I remember it being a beautiful summer day and I couldn’t believe how depressed I was.
The quest to find the right doctor
My next doctor was very knowledgeable about the disease, but he was rushed because of his busy schedule. I needed someone to listen to me. I was not happy at this moment and didn’t want to see any more doctors.
I went to see the next doctor because my husband was pushing me to do so. By the time we got to see the 3rd doctor, I had given up hope. This is how erythrodermic psoriasis can make you feel. Well, this doctor turned out to be my saving grace. We put together a plan of action to help me.
If you experience an erythrodermic flare...
It took 3 months for me to be pain and itch-free. I'm so thankful it didn't get worse - and I had the sense to prioritize my health. I have now had this great doctor for over 10 years. I’m so glad that my husband and I spent the time searching on that summer day.
If you experience an erythrodermic flare, immediately contact your health care provider for treatment. The treatment plan may change after your erythrodermic symptoms have cleared. Your provider may recommend topical treatments, oral treatments, or biologics for continued management of your psoriasis.
My experience was manageable (to an extent) but depending on how severe your symptoms are, you may need to be hospitalized for treatment.
Are you recently diagnosed with psoriasis?