From the Editor
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. Whenever you have information to share, email your “sharings” to editor@prpSurvivalGuide.org.
Bill M — Plano, Texas
PRP is such a fickled disease. There are PRP patients who would love to sleep 8 to 10 hours at night but can only manage 4. Here is what worked for me. Please use “Leave a Reply” at the bottom of this webpage to share what worked for you.
PRIOR TO DIAGNOSIS
During the first two months after onset — when my first dermatologist was convinced I had seborrheic dermatitis — I was told to sleep in DAMP long johns after having slathered my entire body with triamcinolone OINTMENT. There were nights that I never fell asleep.
The only benefit of that experience with OINTMENT was to tell my third dermatologist I wanted triamcinolone cream. He told me that the ointment was more effective than the cream. I told him, “I don’t give a rat’s a##. Prescribe cream.
That was the first time and only time I ever needed to “pull rank” on my dermatologist. I learned that a patient does not have to be a lemming. Articulate a reason and defend your position. Ask “Why?”
It took me MONTHS to find the right nighttime regime to virtually guarantee a good night’s sleep from 11 PM to 7 AM.
(1) drugs (hydroxyzine, Ambien® and Extra Tylenol®,
(2) an EXHAUSTING evening shower and total body slathering of topicals, and
(3) the use of appropriate covering on feet (plastic bags over which I wore non-skid socks) and hands (nitrile gloves).
IMPORTANT — But there was a fourth rule that could not be broken: NO liquids after 9 PM. If you quench your thirst at 11 PM, your bladder will set the alarm in your brain for 3 AM.
For Members of the PRP Facebook Community
Am I the only one who can sleep 10-12 hours? I’ve never slept like this before. I take a Hydroxyzine tablet before bed for the itching, but I can’t see it helping me sleep that long.
I used to sleep 6-7 hours, and once my eyes were open, I was up! Now, once my eyes are open, I roll over and go back to sleep! LOL
The New Yorker: The Secrets of Sleep
Author: Jerome Groopman, October 16, 2017
BBC News: How much can an extra hour’s sleep change you?
October 9, 2013: The average Briton gets six-and-a-half hours’ sleep a night, according to the Sleep Council. Read about an unusual experiment to see if this is enough.