The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.

Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist? Share articles  you feel might be worth reading or websites worth visiting.

Bill McCue (Plano, TX)

Whack! Whack! Whack!

When I was in 4th grade (circa 1956), my mother, father, brother and I moved to a small, World War II vintage house in Bristol, Connecticut. It had two small bedrooms, a bathroom, a living room and a small kitchen. My father turned half the basement into a workshop.

I remember watching television in the living room and hearing the Whack! Whack! Whack! of a hammer. The sound came through the floor and the heating vents. Whack! Whack! Whack!

There were times — more than my Dad would admit — when the Whack! Whack! Whack! was interrupted by an ever-so-brief pause of silence followed by a staccato yelp:

“SWEET JESUS!”

After an even shorter pause the Whack! Whack! Whack! would resume.

My brother and I called those “Sweet Jesus” moments and defined our approach to pain management over the years.

During the early months of my version of PRP I had a much pain as any other PRP patient. My “Sweet Jesus” moments came whenever I moved into and out of my bed, or onto and off of the toilet. Just a few seconds of intense discomfort. Most of the time I just thought SWEET JESUS to myself.

When I finally got to the point when I would go to Walmart, first as a passenger and later as the driver, the maneuver to enter or exit the car, from standing to sitting — and vice versa — usually required an audible “SWEET JESUS” to the dismay of passersby and shoppers.

However, as my journey  progressed I remember getting into my car and feeling just a hint of discomfort. It was a “Baby Jesus Moment” that heralded a true healing milestones.

Tierney R (Virginia Beach, VA)

I know exactly what you’re talking about because I have those “Sweet Jesus” moments. Sitting down while getting into the car is one of the moments; swinging my legs to get out of the car is another. “Sweet Jesus” is the reason I take morphine and oxycodone on a daily basis. The pain isn’t there all the time but the medicine is available on a continuous basis for those times when I stretch my legs in an uncomfortable way, or the myriad other ways in which PRP causes “Sweet Jesus” moments for me. They don’t last long…. just enough to elicit a yelp of pain. Thank God my husband is usually by my side to gently lend a hand. “Sweet Jesus”, I know you well.

Tierney R (Virginia Beach, VA)

MORE ON PAIN — I shower about once a month. The other times, when I really have to, I take a sponge bath. It hurts to take a shower……it dries me out too much. It scares me. It doesn’t matter what I put on afterward. I become dry as a desert and it hurts and itches tremendously. I dread going to the doctor because that’s when I do take a shower. The pain is immense. Another “sweet Jesus” experience that lasts about two days for me.