7/5/2018 by Share Your Story

ERYTHRODERMIC PSORIASIS: misunderstood and deadly

Diane Talbert explains the seriousness of erythrodermic psoriasis and why it's not just "dry skin"


BY DIANE TALBERT

I have had erythrodermic psoriasis several times in my life. This is the rarest form of psoriasis that you rarely hear about but looks scary in pictures. Because of that, I want to share my story with you and especially with those who say “psoriasis is just a dry-skin disease”erythrodermic psoriasis

First off, erythrodermic psoriasis can be fatal. It attacks your whole body with a vengeance and affects your skin in a way that impacts your entire being. It can lead to:

  • Dehydration, because the pores of the skin usually control evaporation of sweat
  • Infection, because the skin protects more vulnerable tissues
  • Fluctuations in body temperature, because the skin helps insulate the body
  • Excessive strain on kidneys and heart due to out of control inflammation

I have only met 4 or 5 people who have had this type in 55 years of me having this disease.

MY FIRST ATTACK OF ERYTHRODERMIC PSORIASIS

I had my first episode with erythrodermic psoriasis in 2003. I was on a biologic drug as part of a research study. When the study was over, within a matter of days, my whole body erupted from head to toe! I looked like someone one had painted me red. I am a dark skinned person, so this was not a pretty picture. My skin started peeling off in layers. When I went to bed at night and got up, you could see the sheet of skin left behind where I was lying.

I can’t even begin to tell you the excruciating pain I was in. And the itch?! So bad I can’t even explain. I didn’t have skin yet it hurt like crazy. It was a good bad feeling.

This had all happened to me in the summer time. It was 80 degrees out but I would be shivering. I knew something was terribly wrong because I couldn’t get my body temperature to stay the same. It was up and down.

After 3 days of this I went to see my doctor and told her about the symptoms I was having. I was scared to death. She immediately said, ‘you have no skin. This is why your body can’t regulate heat’. She told me to see a dermatologist at once. I had plaque psoriasis, guttate psoriasis and erythrodermic psoriasis all in one week.

SOMETIMES DOCTORS DON’T KNOW

I immediately made an appointment with the doctor who ran the clinical study – who had put me on the new biologic drug from the beginning. She told me to come see her the same day. Well, lo and behold, she examined me and said, “I don’t know what to do for you; you have the worst case of psoriasis I have ever seen.”

When your doctor says something like that to you, what do you do? At first I cried and then I got scared. I knew in my mind I wasn’t going to take this lying down. My husband and I set out on a crusade to find someone to help and treat me.

SECOND, THIRD, FOURTH OPINIONS

He took off a few days to take care of me. The touch of water made me cringe. I couldn’t walk or take care of myself. We made appointments with 3 doctors in one week.

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. I never saw him again.

The 2nd doctor was very knowledgeable about what I had, but he didn’t take the time to plan out a solution for my problem. He was too busy. I needed someone to just “get it”, and he didn’t. I was not happy by this time and wanted to give up. Was life was worth living looking like a monster?

We decided to see the 3rd doctor because my husband could tell I just wanted to give up by now and I wasn’t getting any better. I had made peace with my savior. This is how bad this disease had me down.

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 only then did he examine me. We put together a plan of action. I’m still seeing that doctor 15 years later.

WHY NOT GO TO THE ER?

People have asked me why I didn’t go to the emergency room. In my mind, I didn’t think a hospital had the knowledge or the know how to help me. After all, my own dermatologist didn’t know what to do.

YOU CAN’T GIVE UP

It took many months and plenty of strong drugs for me to start feeling normal again and get my life back. I had to take short term disability from work and am thankful that they understood. I’m so glad that my husband and I searched on that summer day to find someone for me. You can’t give up.

So the next time someone tells you that psoriasis is a dry skin disease or just put some lotion on it, please share my story with them.

And YOU can share your story with Patients Rising HERE.


Diane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has been an advocate for this disease for over a decade now. Diane has run support groups in the Maryland, DC and Virginia area, is a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis and stop the stigma associated with it. She loves being a wife, mother and grandmother. Diane Talbert


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