June 2020

Finley, A.Y. Abstract on the Dermatology Life Quality Index (DLQI) Statement #1 – The Dermatology Life Quality Index (DLQI) is a simple practical questionnaire technique for routine clinical use. Comment: Some might say that the DLQI is “too simple ” and that the challenges of treating PRP should not be considered  “routine clinical use”. Statement […]

How the Psoriasis Area and Severity Index Works Author: Dennis Thompson Jr. Medically Reviewed by Pat F. Bass III, MD, MPH. Last Updated: April 5, 2012 Source: EverydayHealth.com The Psoriasis Area and Severity Index (PASI) helps in diagnosing psoriasis and judging whether a patient’s condition is improving. The Psoriasis Area and Severity Index (PASI) is an assessment

Editor’s Note — When the PRP community howls at the moon and we are thinking HANDS, we are thinking about palms, fingers, fingernails, dexterity, pain, itch, appearance and more.  On June 26, 2018 Beth R from Bristol, England posted the following: “I still have very thick leathery palms and soles but it is the hands

In 2018, Dr. Teri Greiling, a dermatologist at Oregon Health and Science University, embarked on a research project to investigate the clinical response and safety of ixekizumab (brand name Taltz®) in treating for moderate to severe pityriasis rubra pilaris. The research was described as a single-arm, investigator-initiated trial conducted in adult patients with moderate to

   From the Editor… If you would like to submit a “Statement of HOPE” for inclusion in the PRP Survival Guide, please use “Leave a Reply” at the end of this webpage. Alan B, LakeLAND, Florida, USA Snippet of Hope I was scared when my PRP journey began. Why me? How long will this journey last. I

How much do you really know about pityriasis rubra pilaris? What if you had the opportunity to test your knowledge against the infamous JEOPARDY! game board with it’s six categories, each category with five questions valued at $100, $200, $300, $400 and $500 respectively. How many of the 36 questions could you answer correctly? History for $100…

What are the fiscal challenges of PRP? PRP patients and caregivers understand the physical challenges of PRP. We all know itch. We all know pain. We know the impact PRP has on vision, mobility, dexterity, and sleep. While the treatment protocols may vary in effectiveness, we can generally call upon healthcare professionals to help us

From the Editor The challenges we face to body, mind and spirit can be debilitating, demoralizing,  and de-mobilizing. Of ALL the symptoms of pityriasis rubra pilaris I had to endure during my 20-month journey, it was my feet and the impairments to my mobility that topped my list. Swollen. Cracked. Bleeding. Painful. However, once my feet returned to near

So you think you want to help. I hope you will. From the Editor — On the Road…Our Journey from Onset through Remission is NOT a scholarly journal. The 12-page newsletter represents, however, the collective experiences, insights and observations of PRP patients and caregivers. It deserves a Peer Review by PRP patients and caregivers BEFORE it

This is a “landing page” for an article in the June 2020 issue of On the Road … Our journey from Onset through Remission. “Leave a Reply” below and I will confirm when this page is ready to review. Bill McCue