From the patient/caregiver perspective, there are three observations to be made about treating pityriasis rubra pilaris:
(1) Each PRP journey is unique.
(2) You are not alone. We are on this journey together. Others have traveled the same road. There is a global PRP community
(3) What works for one doesn’t work for all. This is the mantra of the PRP global community. I personally like to add the caveat: If it works for one, then there’s hope for me.
Treating PRP focuses on treatment options (prescription drugs and topicals) as well as managing our expectations. We all learn early in our PRP journeys that the efficacy of treatment is a roll of the dice. We also learn that not all dermatologists are created equal. Not all dermatologists are PRP savvy. We want patients and caregivers to have a basic understanding of the options and confident in your ability to ask your dermatologist important questions.
❏½ What are the treatment options for PRP?
❏½ Patient Assistance Programs – COMING SOON
❏½ Laddered Treatment for Pityriasis Rubra Pilaris (Dermatology Times)
❏½ Why are PRP patient resources a secret?
❏½ Is PRP an autoinflammatory or autoimmune disease?
❏½ How bad is my version of PRP going to get?
❏½ Finding and evaluating online resources
❏½ The challenges of step therapy?
❏½ The challenges we face treating PRP
❏½ Testing your liver – Food for thought
❏½ What is the importance of blood work, labs and liver, testing?
❏½ How to calculate coverage (Rule of Nines)
❏½ Self-advocacy strategie, e.g., preparation, participation, education and Self-Advocacy
❏½ Healing Milestone, Managing Expectations and PROGRESS
❏½ Issues related to COVID-19 Clearinghouse
❏½ The impact of comorbidities on the treatment of PRP
❏½ Mental Wellness and the impact on treating PRP
❏½ FUTURE Referrals: eyes and impaired vision, hands and impaired dexterity, feet and impaired mobility, mental wellness
❏½ Efficacy of flu shots
❏½ Cost of Healthcare – Horror Stories Help with Travel Costs
❏» How does the lack of FDA approval impact the availability and affordability of treatment for PRP? Revision pending
❏» Will the Federal Drug Administration ever approve a treatment for PRP? Revision pending
PRP TREATMENT OPTIONS
