From the Editor — DRAFT The following is a discussion about a topic that frustrates many PRP patients and caregivers. We must find a way to have dermatologists provide patients diagnosed with PRP a referral to PRP patient support resources. When a dermatologist in the US renders a diagnosis of pityriasis rubra pilaris, a diagnosis based on clinical […]
Why are PRP patient resources a secret? Read More »
From the Editor… If pityriasis rubra pilaris is, in fact, an autoimmune disease, then supporting the American Autoimmune Related Diseases Association would seem like an appropriate path forward. It was on this basis that I approached the AARDA in 2015 intent upon having the PRP Alliance join. It became clear, however, that it was the view
AARDA does not considers PRP an autoimmune disease Read More »
From the Editor… The Genetic and Rare Diseases Information Center once again provides patient-friendly information. Their “coverage” of autoinflammatory Diseases meets that standard. The following information is dated January 2017. If you REALLY want to know about autoinflammatory diseases, this is worth a cup of coffee and some “Quiet Time”. Autoinflammatory diseases are a relatively
Understanding Autoinflammatory Diseases — GARD Read More »
From the Editor… When a member of the PRP Facebook community asked about cryotherapy as a way to provide relief from pain and itch, I conjured a vision of my dermatologist with the “Cryo Gun” he uses to ZAP potential skin cancer targets. How could that reduce pain and itch? Then I saw the image of a patient in
Efficacy of Whole Body Cryogenics Read More »
From the Editor… As a rule, PRP patients and caregivers are given the proper spelling of pityriasis rubra pillars, the acronym “PRP” and a referral to Dr. Internet. Some of us reach out to Dr. Yahoo. Others seek out Dr. Google. It doesn’t take long for us to learn that using PRP doesn’t work. Enter “PRP” and the
Asking Dr. Google? Read More »
From the Editor The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge. Share what you have learned about juvenile onset PRP as a parent/caregiver. Share articles you
PRP, Children and Parents Read More »
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. PRP patients and caregivers often require one or more referrals
Building a PRP Team of Healthcare Professionals Read More »
From the Editor… I was lucky. My wife has GREAT insurance. My copays were low and acitretin, triamcinolone, Desonide, Clobetasol, urea lotion, and hydroxyzine and worked. I was “active” with PRP for only 20 months (8/2012 to 04/2014). For too many PRP patients and their caregivers, the cost of healthcare can dramatically limit access to affordable drugs. The
Cost of Healthcare — Horror Stories Read More »
Editor’s Note: For nearly 12 months I was prescribed acitretin (25mg – 50mg) and I applied prescribed topical creams: Clobetasol (palms and soles), Desonide (face and ears) and triamcinolone (everything else). While the PRP community discusses over-the-counter moisturizers, there is very little discussion of prescribed topicals. Perhaps this post will help jumpstart that discussion. Triamcinolone Triamcinolone is
What do I need to know about prescribed topicals? Read More »
Editor’s Note: A member of the PRP (email) Support Group posted the following message to the PRP-L List which prompted a response from a fellow PRP patient. Original Post “For those who may have missed or who need the reminder, here is a published article that reviews one category of PRP treatment and examines whether
Biologicals — The efficacy of Tumor Necrosis Factor (TNF) Read More »