From the Editor…
PRP Awareness Month (November 1-30) provides an opportunity for the PRP community to revisit the PRP Survival Guide and reassess the current information. What’s missing? What information do you want to have available. What questions are in need of answers? Share your thought via email to editor@prpSurvivalGuide.org.
For most PRP patients and caregivers, a diagnosis of pityriasis rubra pilaris is life-altering. Even before I started treatment I wanted to know how long my PRP would last. Dr. Google and Dr. Yahoo reaffirmed that it would be three to five years.
However stated, the objective of a PRP treatment plan is remission. Yet, 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.
While REMISSION Another question related to remission: “How long does it take to get from ONSET to REMISSION?”
We can easily calculate duration based on two separate datapoints. But, how do we know when we are “in Remission” on just on the off ramp.
✽ Onset date: month/year
✽ Remission date: month/year
My onset date was early August 2012 and I was symptom free and med free in early April 2014. That’s 20 months.
However, I was med free in December but had some lingering issues, e.g., hair and fingernails. My duration could be as short as 16 months.
The real problem is in developing accurate metrics. It’s all about comparing apples and oranges. We need a universal definition of Remission — either apples OR oranges.
As of April 16, 2019, the PRP Global Database maintained 2,817 patient profiles of which 524 list REMISSION as the current status. Unfortunately, only 252 include a REMISSION DATE.
Additional articles to ponder…
✽ I hate holly more than PRP — A “Remissioners” Retrospective
✽ PRP Feedback, December 2017 (59 comments)