How to Use the PRP Survival Guide

From the Editor

I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead.

Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris.

That evening I performed a series of internet searches and devoured  two dozen healthcare-related websites. Unfortunately, the information I uncovered was limited in scope and redundant in content. Even more disconcerting, however, was the presumption that I was familiar with medical terms. Arrgh!

Sometime during the early morning hours of November 29, as I became overwhelmed by my ignorance, I knew I needed to find a PRP Survival Guide.

When I discovered that there wasn’t one, I started writing it. Three years ago — May 20, 2015 — the PRP Survival Guide was officially introduced to the worldwide PRP community.


SEARCHING THE INTERNET

The PRP Survival Guide is offered as an alternative to unstructured and random forays using Dr. Google and Dr. Yahoo. All too often these efforts lead to redundancy, frustration and even misinformation. If we do are job properly, you will either (1) find the answers you seek or (2) find other options. Learn more about using Dr. Google.

SEARCHING THE PRP SURVIVAL GUIDE

Please use the SEARCH field to locate posts, PDFs and other links. questions, chapters and topics.  The most effective way to access a specific Chapter Index is to use the Table of Contents link below.

TRANSLATE FEATURE

Every page in the PRP Survival Guide has a TRANSLATE button powered by Google Translate. The pull-down menu offers 100 language options. The translation applies to the post/page as well as any replies that follow.

TABLE OF CONTENTS

The PRP Survival Guide is divided into six CHAPTERS.          

Chapter 1 — Understanding PRP 
These are the questions asked early in the PRP journey by newly diagnosed patients and caregivers,family and friends, co-workers and employers, teachers and school administrators, and so many more.         

Chapter 2 — Treating PRP
The focus here is on treatment options (prescription drugs and topicals) as well as managing our expectations. We all learn early in the journey that treatment is a roll of the dice — what works for one doesn’t work for all. We also learn that not all dermatologists are PRP savvy.

Chapter 3 — Living with PRP
Every aspect of the PRP experience … coping with the 24/7 challenges to body, mind and spirit. Feedback by hundreds of fellow travelers who have shared their insights based on their unique journeys with posts and comments as members of the PRP Facebook and RareConnect communities.                  

Chapter 4 — PRP and Remission
For most PRP patients and caregivers, the outcome we seek is remission. For others, the PRP journey is defined by long-term management of symptoms rather than remission.       

Chapter 5 — PRP Research
The PRP community has long lamented the lack of research. Since October 2012, however, researchers at Thomas Jefferson University have been conducting ongoing genetic and clinical research. During the past few years Yale University, Oregon Health & Science University and a joint effort involving UCLA, USC and Kaiser Permanente given us hope.       

Chapter 6 — PRP Advocacy
As an ultra-rare skin disorder, PRP must find allies to open doors. How can the PRP community most effectively impact improvements in the diagnosis, treatment and research for PRP?

✯✯✯ BOOKMARK ✯✯✯
A standalone Table of Contents
has been created
for PRP patients and caregivers
who are NOT first-time visitors.

DISCLAIMER
The PRP Survival Guide is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to provide users with information to better understand and manage the burden of pityriasis rubra pilaris on body, mind and spirit. No individual should indulge in self-diagnosis or embark upon any course of medical treatment that is described in the PRP Survival Guide without first consulting a health care professional.

Survival Guide

Efficacy of Prednisone

 

Editor’s Note:

On December 1, 2018, a member of the PRP Facebook Support Group posted a familiar question about the efficacy of prednisone in the treatment of pityriasis rubra pilaris.

PRP patients and caregivers are familiar with the PRP treatment mantra: What works for one doesn’t work for all. However, the question is not whether prednisone is a viable treatment option for PRP. A better question may be: Should prednisone ever be prescribed to patients diagnosed with PRP? The insights and experiences of PRP patients and their caregivers must be harvested and shared. The PRP community must develop effective channels of communication to the following:

❉  All dermatologists currently treating patients diagnosed with PRP ❉  Dermatology departments in teaching hospitals ❉  Society of Dermatology Physician Assistants ❉  Dermatology Nurse’s Association ❉  American Academy of Dermatology

There are 1,423 members of the PRP Facebook Community representing 1,217 PRP patients. If you are a “PRP Facebooker”, you may CLICK HERE to access the original post. However, for the 504 PRP patients who are not not members, the following is a recap of the feedback. Feel free to Leave a Reply below to add your insights and observations regarding prednisone.


INITIAL POST

 

Eva B (Georgia, USA) My dermatologist wants to start me on 5mg of prednisone. Anyone have advise on if this is advisable for PRP? Don’t want to take it if it won’t help. I’m in early stages of another round of rash after being in remission for a couple of years. My original dermatologist retired.


COMMENTS

Jan T (New Jersey, USA) 👎  I went to the doctor so early. My rash was limited to a few spots on my chest and neck. I was prescribed prednisone  when they didn’t know what I had. Hence the trial of prednisone. Apparently prednisone works like magic on many rashes. In my case it was  stopped when they determined I had PRP. Prednisone is not good if you have osteoporosis and can cause or worsen cataracts. Not worth it in my case, as I have both — especially since it didn’t help the PRP rash one bit. Prednisone didn’t do a thing — either bad or good. I didn’t develop erythroderma until I’d been off the prednisone for a full two months, so I don’t think they were related in my case.


Holly K (Pennsylvania, USA) 👎  Didn’t do much for me

Ellie W (England, UK) 👎  May be a coincidence but husband ended up in hospital with full body erythroderma not long after starting prednisone.

Lidia G

👎  Didn’t do much for my husband, dermatologist said it may have made it worse for my husband


Nathalie C (Ontario, Canada) 👎  Ended up a full body rash when the prednisone wore off about a week after tampering off it. Not worth it.


Diedre H (Louisiana, USA) 👎  I was told that it does not help at all!


Jessica H (Georgia, USA) 👎  Prednisone did nothing for me but aggravate


Gayle F (California, USA) 👎  Before doctors knew what it was, I was on very high dose of prednisone for the itch. It did not work at all and made me in a huge fog. weaned myself off.


Louise L (Pennsylvania, USA) 👎  We were told it is not recommended for PRP.


Lorna R (Oregon, USA) 👎  If indeed you have PRP, conventional wisdom seems to be, steroids are not beneficial.


Karen P 👎  They put my brother on before proper diagnosis but did help

Doreen A (Florida, USA)

👎  Hubby was put on it before we had a diagnosis of PRP. Did not help him.


Janell P (Oklahoma, USA) 👎  I was also on massive doses of prednisone before properly diagnosed. It did nothing for PRP, ended up in hospital.

Diane H (Minnesota, USA) 👎  Don’t take it.


 Suzanne M (Maryland, USA)
👍  I was a lucky one – prednisone has helped me and I am now on a lower dose and only increase if I start to flare – good luck!


Frankie B (New York, USA)
👍👎  Prednisone also helped me when the itch became unbearable during a flare up Have  now been tapered to 2.5 mg every other day. The drug is vile with its horrible side effects, but way better than the itching!

Erica B  (New Jersey, USA) 👎  Prednisone made me worse. It was a small dose only for a short time.

Gail S (Michigan, USA) 👎  My doctor said prednisone is not for PRP. Could help if you have something additional going on.

Bill M (Texas, USA) 👎  Prednisone put me in the hospital. I had hallucinations that included a 20-foot rubber duck with dodges of 60mg. Had been misdiagnosed with seborrheic dermatitis.

Sandra C (Virginia, USA) 👎  Prednisone did nothing for me either

Cheri H (Nebraska, USA) 👎  Remicade helped me the most. Almost to remission but not. Now on 5 mg prednisone and it helps with joint pain and flares.


Kelli G (California, USA) 👎  Prednisone did not help me at all. In fact this week my #2 dermatologist agreed with me when I said I felt the prednisone from dermatologist #1 fed my rash.

Eileen S (Pennsylvania, USA) 👎  Do not take it! Didn’t do a damn thing for me😥

Deborah B (North Carolina, USA) 👎  Did not help me.

Abbie C (Texas, USA) 👎  I don’t think Prednisone helps PRP and if has unwanted side effects.

Keith C (Alabama, USA)

👎  My husband was on 40 mg daily for about a month or more. Blew up like blow fish ate us out of house and no help for PRP.


Mary E (Virginia, USA) 👎  Did not help me

Carol L (Florida, USA) 👎  Prednisone was a horrible experience for me.

Susan V 👎  It didn’t help me.

Phil W (Western Australia, Australia) 👎  No help, it possibly made it worse!

John H (Florida, USA) 👎  Don’t believe it made it worse but didnt really help either.

Burt U (Texas, USA) 👎  Prednisone made it worse

Glen M (Illinois, USA)  👎  Prednisone is counter indicated for psoriasis a very close relation of PRP as it can truly exacerbate it ie erythroderma.

Margaret H (Australia)
👎  Yes thats what happened to me . I was taken 75mg prednisone for my flare up with PRP and erythroderma ,coming off was a living nightmare.

Wilhelmina K (New Zealand)

👎  Prednisone was the first thing the dermatologist stopped when diagnosed with PRP. It won’t do anything for


Tom P (Illinois, USA) 👎  My wife took one dose but because she is also diabetic it sent her sugar to over 400. It will effect your sugar even if you are not a diabetic, not sure how high but everyone is different.


Karen A (Florida, USA)

👎  My dermatologist at that time didn’t know what I had. I was prescribed prednisone before I was diagnosed with PRP. The prednisone made mine PRP worse and almost put me in hospital. Stopped it after a bit gradually and found another Derm who did recognize PRP.


Max W (Oregon, USA) 👎  Prednisone helped me so much inflammation wise but I doubt I can deal with the side effects ever again


Russ D (England, UK) 👎  Prednisone full dose, according to my dermatologist, was the thing that made me erythmadermic so quickly. He told me that anyone with Psoriasis or PRP should never be given it.


Murray Rose (British Columbia, Canada)
👎  I was prescribed prednisone before I went to see my dermatologist who took me off it immediately.
 
Diane S (Arizona, USA) 👎  Before I was diagnosed with PRP, they thought I had eczema or psoriasis and prescribed the prednisone. When I went to the doctor who diagnosed me, he said the prednisone was the wrong drug. Ditto to what people are saying above. My derm told me that it would get worse before it got better once I went off the prednisone. And it sure did. But at least then the diagnosis was definitive.


Max W (OR, USA)
👍👎  It helped me a ton. I think I’m in the minority here— but had such intense side effects I had to stop.