How to Use the PRP Survival Guide

From the Editor

I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead.

Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris.

That evening I performed a series of internet searches and devoured  two dozen healthcare-related websites. Unfortunately, the information I uncovered was limited in scope and redundant in content. Even more disconcerting, however, was the presumption that I was familiar with medical terms. Arrgh!

Sometime during the early morning hours of November 29, as I became overwhelmed by my ignorance, I knew I needed to find a PRP Survival Guide.

When I discovered that there wasn’t one, I started writing it. Three years ago — May 20, 2015 — the PRP Survival Guide was officially introduced to the worldwide PRP community.


SEARCHING THE INTERNET

The PRP Survival Guide is offered as an alternative to unstructured and random forays using Dr. Google and Dr. Yahoo. All too often these efforts lead to redundancy, frustration and even misinformation. If we do are job properly, you will either (1) find the answers you seek or (2) find other options. Learn more about using Dr. Google.

SEARCHING THE PRP SURVIVAL GUIDE

Please use the SEARCH field to locate posts, PDFs and other links. questions, chapters and topics.  The most effective way to access a specific Chapter Index is to use the Table of Contents link below.

TRANSLATE FEATURE

Every page in the PRP Survival Guide has a TRANSLATE button powered by Google Translate. The pull-down menu offers 100 language options. The translation applies to the post/page as well as any replies that follow.

TABLE OF CONTENTS

The PRP Survival Guide is divided into six CHAPTERS.          

Chapter 1 — Understanding PRP 
These are the questions asked early in the PRP journey by newly diagnosed patients and caregivers,family and friends, co-workers and employers, teachers and school administrators, and so many more.         

Chapter 2 — Treating PRP
The focus here is on treatment options (prescription drugs and topicals) as well as managing our expectations. We all learn early in the journey that treatment is a roll of the dice — what works for one doesn’t work for all. We also learn that not all dermatologists are PRP savvy.

Chapter 3 — Living with PRP
Every aspect of the PRP experience … coping with the 24/7 challenges to body, mind and spirit. Feedback by hundreds of fellow travelers who have shared their insights based on their unique journeys with posts and comments as members of the PRP Facebook and RareConnect communities.                  

Chapter 4 — PRP and Remission
For most PRP patients and caregivers, the outcome we seek is remission. For others, the PRP journey is defined by long-term management of symptoms rather than remission.       

Chapter 5 — PRP Research
The PRP community has long lamented the lack of research. Since October 2012, however, researchers at Thomas Jefferson University have been conducting ongoing genetic and clinical research. During the past few years Yale University, Oregon Health & Science University and a joint effort involving UCLA, USC and Kaiser Permanente given us hope.       

Chapter 6 — PRP Advocacy
As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP?

✯✯✯ BOOKMARK ✯✯✯
A standalone Table of Contents
has been created
for PRP patients and caregivers
who are NOT first-time visitors.

DISCLAIMER
The PRP Survival Guide is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to provide users with information to better understand and manage the burden of pityriasis rubra pilaris on body, mind and spirit. No individual should indulge in self-diagnosis or embark upon any course of medical treatment that is described in the PRP Survival Guide without first consulting a health care professional.

Survival Guide

Overview of the Mayo Clinic Study

From the Editor…

I have been in communication with Dr. Jason Sluzevich from the Mayo Clinic in Jacksonville, FL. He is the principal investigator for a PRP study. Dr. Sluzevich writes:

“This study is being done to evaluate whether Cosentyx can improve the signs and symptoms of PRP in ADULT ONSET patients. This study will also investigate the cause of PRP by examining the levels of gene expression in skin samples taken before and after treatment with Cosentyx. Cosentyx is FDA approved for the treatment of moderate to severe plaque psoriasis in adult patients who are candidates for systemic therapy or phototherapy but is not FDA approved for use of adult-onset PRP. This drug has been approved for use on the study.

❉ The sponsor will consider helping with travel expenses; drug and visits are covered.

❉ The study involves 5 trips to Mayo. So patients near FL and AZ would probably have the easiest time participating.”

If you are interested, CAREFULLY review the parameters of the study at: https://clinicaltrials.gov/ct2/show/NCT03342573…

If you are still interested, then reach out to Dr. Sluzevich directly via email: Sluzevich.Jason@mayo.edu

There are TWO members of the PRP Facebook Support Group, both from Florida, currently enrolled in this Mayo Clinic PRP Study:

If you are considering a biological for the treatment of your ADULT onset PRP, consider this opportunity.