Pityriasis Rubra Pilaris...Have you heard of this before?

Spring 2005 CSANews Issue 54  |  Posted date : May 17, 2007.Back to list

What I'm about to tell you is somewhat personal, but it's so unusual that I wanted to pass it on to you. And for those of you who were (are) wondering where I was this past winter, this story will explain it.

In June of 2004, I noticed a red patch on my chest about the size of a loonie; it was very itchy and it bothered me so much that I visited my family doctor who prescribed a cortisone medicine and said (jokingly), "rub this on and call me in 10 days." Well, as the days went by the red patch was getting larger and larger and in eight days, it had spread across my chest and my upper arms and shoulders. My doctor "thought" it might be eczema and suggested that I see a dermatologist.

My dermatologist is just a young guy who is fresh out of internship; he took over my previous derm's practice last year. I felt confident that he would diagnose my problem right away. A biopsy was taken and the results came back telling us that their findings were inconclusive, but "could" be eczema or psoriasis. My dermatologist decided to treat the problem as eczema and prescribed a stronger medication.

Most of us know that eczema is a nasty skin disease and psoriasis can be even worse, but my red patches, which now covered my entire upper body, just wanted to be different and wouldn't respond to the treatment. By mid-September, my entire body was covered and continued to get itchier as each day passed. The skin of my hands and feet was now thick, tough and scaly and very, very sore! My eyes burned and became very dry.

In mid-October, I collapsed at home and was rushed to the hospital, where extensive tests were conducted to find out what was happening. Many tests later, the doctors were still unable to make a definite diagnosis and that's when my son decided it was enough. He had me air-lifted to the Emory University (teaching) Hospital in Atlanta, Georgia. The hospital has a world- renowned dermatology department which is not easy to access, but I was lucky – my son, who lives in Atlanta, knows the right people, especially his neighbour, a dermatology professor at Emory.

Here we go again, test after test for five days until my condition was diagnosed as Pityriasis Rosena Pilaris (PRP). Whoops – the next day it was changed to Pityriasis Rubra Pilaris. PRP is a non-fatal rare skin disorder of unknown origin with no cure except for time, which could be anywhere from one month to a lifetime. I'm approaching my ninth month and am enlisting the help of steroid medications and lubricating my body several times a day with Triamcinolon, a corticosteroid petroleum-based ointment used to reduce itching (doesn't work sometimes), swelling and redness. My wife Sally calls me a PRPer – "pretty red person."

I sincerely hope that I didn't bore you with this story, but PRP is so rare that many physicians are unfamiliar with it. The physicians at the Winter Haven (Florida) Hospital were stumped; it took a large, well-informed dermatology clinic at Emory to diagnose it – and that took five days! And I certainly don't want to imply that there aren't other people suffering from serious diseases.

With the help of the above medications and the wonderful support of my family and friends, I'm confident that recovery is not far away. And a very SPECIAL THANKS to the folks at Medipac and the CSA for their support and understanding! I'll be forever grateful!

By the way, if you or someone you know has PRP, there's a very informative support website at www.prp-support.org and please let me know by calling, 1-877-633-4722 or leeder@tampabay.rr.com.