I am Erythrodermic (HUH?)

What is erythrodermic psoriasis? It is a very severe skin condition that can be fatal. It affects almost your whole body. Only a small population of the psoriasis community ever gets it.

This is my erythrodermic story. You can’t make this stuff up.

My worst experience with this was in 2003. I was put on a short-term study for a biologic and abruptly taken off. Within a week, my body exploded. I’m a very dark skin person but I looked like someone had taken boiling hot water and poured it all over my whole body. I was bright red. My skin was falling off in sheets; when I lay down and got back up, you could see the entire outline of my body.

I was in severe pain, but the itch was the worst and very intense. I would scratch and cry, but the scratching felt so good; it was a different kind of itch and a different kind of relief. It’s hard to explain, but it was soothing.

Code red!

I only got scared when my body temperature started going from hot to cold and I would start to shiver in the summer. My body heat would not stay regulated. Sometimes my heart rate would even increase. I was having some scary moments.

I visited my primary care physician and told her about my symptoms. She said this is happening because you have no skin. Go see a dermatologist immediately.

I called the doctor who had put me on the biologic and was told to come in right away. 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 would tell my husband, I don’t think I can live like this. I actually looked like someone out of a horror movie.

I went from having plaque psoriasis, to having guttate psoriasis to having erythrodermic psoriasis all in one week.  I didn’t want to go to the emergency room because I just didn’t think they would have the knowledge to help me since my own dermatologist didn’t know what to do.

Finding help and some relief

My husband took off from work the whole week and we called as many doctors ask we could. I made 3 appointments that week. I remember it being a beautiful summer day and I couldn’t believe how depressed I was.  The first doctor that I met with took my hand and said yep, you have psoriasis. He wrote me a prescription for a tube of cream. I was 90% covered with no skin, burning and itching like crazy. You have got to be kidding me!!!

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 just wanted to die.

I went to see the next doctor because my husband was pushing me to do so and was worried about my condition. By the time we got to see the 3rd doctor, I had given up hope of finding anyone that could help me. I was so bad off that I had made peace with God. This is how bad having erythrodermic psoriasis makes you feel.  Well, my 3rd doctor turned out to be my saving grace. He came in and looked at me and could tell I was sad. He sat and talked to me for 30 minutes and then examined me. We put together a plan of action to help me.

It took 3 months for me to get back to normal and be pain and itch free. I have had this great doctor for over 10 years. I’m so glad that my husband and I search out on that summer day to find someone for me.

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