From the Editor

It took almost four months, two dermatologists, four biopsies and six days in a hospital bed to be “officially” diagnosed with pityriasis rubra pilaris. In contrast it took me only a few hours to conclude that I had just embarked on a three to five-year journey.  Like most, I assumed that my endgame would be total and complete remission.

I was lucky — my PRP  journey lasted only 20 months. I was med-free and symptom-free. Over time, however, I came to realize that I was the exception to the Rule of Remission. I have learned from others who have made — or continue to make — the journey from onset.

The endgame can be elusive.

It ain’t over until it’s over!

Let’s start with what we know about PRP with metaphysical certitude: 

Every PRP journey is unique. 

It has taken me years understand and fully appreciate that “med-free and symptom-free” is not the norm for a PRP journey.  

Over the years I have also concluded that remission is absolutely in the eye of the beholder. The definition of remission can include “symptom-free with meds”, “remission with remnants”, and the least technical variation: “I finally have my life back”. 

Like most PRP patients, I wanted to know how long my PRP would last. Both Dr. Google and Dr. Yahoo reaffirmed that it would be three to five years.

Neither PRP-savvy dermatologists nor the PRP global community of patients and their caregivers have an agreed upon a definition of remission. Does remission mean “no symptoms with no PRP meds? Or is it just “no PRP symptoms”. Or is it something else, entirely. I would like to find out.

We have asked and will continue to ask the global PRP global community to share their insights regarding remission and the endgame.

Managing expectations is an important part of the PRP journey. Let’s define the PRP endgame for ourselves and others.