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.       

✯✯✯ 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.

What Does Remission Really Mean?

From the Editor…

It took almost four months, two dermatologists, and six days in a hospital bed, to be “officially” diagnosed with pityriasis rubra pilaris. It took only four more days for me to conclude that I had embarked on a three to five-year journey that would ultimately end with remission. Fortunately, my journey lasted only 20 months. I was med-free and symptom-free.

Having said that, it has taken me seven years to realize that every PRP journey is unique. I now understand that “med-free and symptom-free” is not the norm.  I have concluded that remission is absolutely in the eye of the beholder. The definition of remission can include “symptom-free with meds”, remission with remnants, and “I finally have my life back”.

On February 24, 2020, a poll was posted to members of the PRP Facebook Support Group to solicit comments for PRP  patients who consider themselves in REMISSION. Here is the response as go February 28.

❋  Members identify themselves as in remission: 106
❋  Once in remission, their PRP did not return: 40
❋  Once in remission, their PRP returned: 26

Whether you are a newly diagnosed PRP patient a seasoned traveler and  want to ponder the end of your journey, ponder the journeys of 45 PRP patients. Each one considers themselves to be in remission.


(1)  Leanne C, Sydney, NSW, Australia

Diagnosis January 2014. Took two years in total until I felt quite normal. My scalp took the longest to heal. I don’t feel I have the energy I used to have. Maybe just getting older, who knows. So glad I made it to the better side of this dark time.

(2)  Gayle F, Palos Verdes Estates, California

Onset: August 2018 at the age of 60. Remission: October 2019 . My skin still is sensitive in some areas (no itching) and original spot is rarely visible. Off all meds (methotrexate and Cosentryx). I thank god, doctors, meds and a positive mindset for the relief from this disease. I do worry sometimes that it will return but chase that away with thoughts that it will never return. God bless you all!

(3)  Ric “Ricardo” C, Costa Rica

I have been clear for 10 years now after suffering it for almost 20. When I feel  my skin to something, I take the antihistamines for a few days but that is it.

(4)  Tonya G, McDonough, Georgia

Started Feb-Mar of 2010 at age 49. Diagnosed in June 2010 after six biopsies. Soriatane got me to remission by April 2011. No meds since then except Vitamin D3, and topicals. I have flare ups that are no fun, but pale in comparison to acute stage. On two occasions my dermatologist has declared that I was no longer in remission. Those setbacks weren’t as bad as the initial acute stage. I still have limited energy, some pain, but I’m not complaining!

(5)  Michelle, Dassel, Minnesota

Answering on behalf of my husband. He has been in full remission about 19 years all due to a change in diet change, chiropractic care, and some supplements.

(6)  Ed D, Worcestershire, England

100% remission, still itchy scalp , but I’m not bothered about that considering what I went through for two years. All happy now

(7)  Trudy M, Shingletown, California

Onset in March 1999. Remission by April 2000. Still in remission with no meds.

(8)  Karen B, North Wales

Onset in 2013 at the age of 62, Still in remission. Still have plaques in my hair, but only a small patch now. Still have broken skin on my upper arms and chest .I Treat with Aveeno cream. Still thankful that i have not suffered a relapse.

(9)  Carol T, Swaffham, Norfolk, England, UK

Onset: April 2019 at the age of 68. Remission date: February 2020.  I now FEEL positive as I FEEL improvement. My friends SEE improvement because they SEE my positivity. BUT the thickened skin on bottom of feet, hard skin on my palms, course and crinkly skin all over my body requiring constant and lavish moisturising, red and dry blotches all over my legs, shaved head due to scalp shedding, course and crinkly skin on face and ears, gunky eyes and sores in nose – all still present.

This is a voyage of discovery usually made up of one step forward and, occasionally, two steps back which is why I am loathe to tempt fate by daring to believe I am in ‘R’ yet. My Dermatologist stopped the Acitretin because of the effects mentioned. I reckon that when I can wear clothes (without them scuffing my skin and sticking to me because of the moisturizer) I will then dare to believe!!!

(10)  Sam D, Sydney, NSW, Australia

Onset: October 2014. Other than a couple of spots of hyperkeratosis (very minor), and skin that cuts easily, I have had zero symptoms since a couple of months before they took me off methotrexate. That was March 16 2017.

(11)  Brian H, Dallastown, Pennsylvania

I would say total remission, my PRP was active from Dec 2014 thru June 2015. It totally cleared by July 2015. No issues since then.

(12)  Linda U, West Newton, Pennsylvania

Onset: January 2015 at the age of 65. Humira was the medication that began my remission. My journey lasted about two years. I am happy with my health and thankful that I am In remission.

(13)  Sean L, The Woodlands, Texas

Onset: May 2015 at the age of 48. Full remission, duration 23 months. Type was Type 1 Adult Onset. I took 25 and 50 mg acitretin for 5 months til I could no longer stand the side effects. Took supplements and still do. Drank LOTS of water and still do. Was released from the doctor as I chose the no medication route. Holdouts are that my scalp is itchy sometimes when I wake up, and I get random tiny whiteheads that start out as larger painful bumps then decrease in size and get a small whitehead, I get these on my legs somewhat frequently and on my abdomen less frequently. Glad the beast has departed. Living with it was sheer Hell!

(14)  Jack B, Colonie, New York,

Onset: November 205 at these of 66. Remission date: June, 2016.  I consider myself in remission although fortunately I did not get full blown PRP.

(15)  Suzanne S, New Cumberland, Pennsylvania

Onset: October 2015 at the age of 56. Remission date: May 2016.I’m doing really well now. My onset came on fast and hard. It took 4 to 5 months and a trip out of state to a doctor that diagnosed PRP. The dermatologist prescribed methotrexate that I reacted very well to. I was probably on the meds for 4-6 months, and then continued to improve.

(16)  David O, Worthing, West Sussex

My PRP symptoms started in February 2016, started to clear October 2017. Back to work December 2016. Completely clear March 2017. Tapered off Acetretin January 2017 to May 2017. Last visit to the Dermatologist July 2017. I considered myself cured/free/back to normal July 2017.

(17)  Kendra H, Stockton, California

Onset: December 2015 at the age of 70. Remission date: April, 2017. I remain in remission. Every itchy bump worries me, but they are just itchy bumps that go away. Humira was the treatment that worked for me.

(18)  Vincenzo M, Taranto, Italy

My onset/diagnosis was in February 2017 at the age of 44 with remission in November 2017. My dermatologist told me it was a very light form. I did paleo and homeopathy for five months. Maybe this helped me. I did the biopsy to rule out cancer. It wasn’t specific to prp… but the dermatologist told me it was it.

(19)  Richard L,  Lansdale, Pennsylvania

Onset July 2016. Remission August 2019. Some very minor recurring residual itch issues – inner elbows and upper thighs, ankles sometimes. Considered non PRP. Only treat with hydrocortisone cream when needed. Still daily moisturizer after shower. Looking forward to more heat and humidity in better weather. Fully normal activities and sleeping for some time now.

(21)  Nick S, Aberdeen, Scotland

Onset: September 2015 at the age of 48. Remission date: November 2016. I consider myself in remission and have for a few years now, but couple of things have changed in my body that make me wonder if it will ever return. First one is, after showering, I get an incredibly itchy scalp for around five minutes or so. Second is that my skin doesn’t seem as resilient as it once was, an example being, if I have my elbows on a table (sorry mum, all that training in manners went to waste) for any length of time the skin will just rub away leaving them tender for a few days. I also seem to get sore joints, hips and legs mostly, that there appears to be no reason for or at least any tests I have in regard to the pain comes up clear. I’ve been free from all medication for several years now. I may just be getting older.

(21)  Vibeke K, Arendal, Norway

Onset: September 2016 at the age of 39. Remission date: May 2018. I am in remission.After nearly four years I still struggle with the skin in my face and scalp, and the fatigue is hard to handle.

(22)  Murray R, Vancouver, British Columbia, Canada

Onset: August 2016. Remission: January 2020. I’m basically in remission but have lingering effects. Daily naps (never had the need pre-PRP and I don’t like having to take them as it breaks up my day too much). Physical strength almost back to normal but is very slow coming about. And, having had this for almost 48 months I agree with you totally – “I can live like this for a long, long time”.

(23)  Wayne M, Sydney, NSW, Australia

Onset: September at the age of 62. I consider myself in remission although I sometimes get an itchy scalp. I have a Stelara injection every 12 weeks but am able to do things I used to before PRP, i.e., golf, walking, a few beers, going to beach, etc.

(24)  Pam M,  Calgary, Alberta, Canada

Onset: October 2016 at the age of 60.  Diagnosed January 2017. A few residual areas with no pain or itching. I am so grateful to have my life back but will forever have compassion and deepest of care for all those still struggling and for those yet to come.

(25)  Daina B, West Sacramento, California

Onset:  June 2016 at the age of 59. Remission date: August 2017. I still get random spots which last 3-4 months and treat with topical only

(26)  Robin M, Tucson, Arizona

Onset: July 2003 at the age of 47. Remission date: April, 2004. Still in remission, no meds, since 2008.  Permanent damage to toenails and fingernails still troubles me, as does the plantar faciitis in both feet I contracted during 8 months bedfast. I have such compassion for those of us still suffering.

(27)  Janell P, Forgan, Oklahoma

Onset: June 2017 at the age of 66.  After 2 years, I consider myself in remission. No meds, skin clear.

(28)  Roberta K, Sicklerville, New Jersey

Onset: May 2017 at the age of 66. Remission date: December 2019. I consider I was off meds for 3 months and symptoms have not returned.

(29)  Mary G, New Hampshire

Onset: August 2017 at the age of 63. Remission date: June 2019.  I considered myself in remission June 2019. Thanks for the work you do!

(30)  Leslie L, Colorado Springs, Colorado

Onset: May 2017 at the age of 64. Remission date: April 2018. Not sure if I’m in remission. Four months is the longest I’ve gone without an injection.  Can’t seem to go longer than 3-4 months without a flare starting up.

(31)  Frank G, Fletcher, North Carolina

Onset: October 2017 at the age of 72. Remission date: May 2019. I consider myself in remission. I still have what the dermatologist referred to as the “mother ship,” a visible blotch on my abdomen that was the first sign to appear, but my symptoms and signs have otherwise all disappeared, other than some lingering ugliness in my feet and toenails, which fortunately does not prevent me from hiking. Leg hair has not fully returned, but who needs that? I am grateful and consider myself very lucky.

(32)  Sam H, Morning Peninsula, Victoria, Australia

July 2017 at the age of 72. Remission date: June 2019. Humira was the only thing that worked for my elderly mother. She has been it full remission for a year now. The side effect she had from the Humira was a reduced immune system. Her derm put it down to the Humira. She’s better than she has been for years. At 78 years old she’s loving every day without PRP

(33)  Mark W, Yarmouth Port, Massachusetts

Onset: February 2018 at the age of 66. Remission date: February 2019. I continue to get easily tired and naps have thus become part of my routine; and I do not have the strength I had pre-PRP. I’m convinced that taking meds that effectively suppressed my immune system has made me more susceptible to other physical/medical issues. But I’m back golfing regularly, enjoying wine with friends, and raising hell with the grandkids! I can live like this for a long, long time.

(34)  Trevor J, Stockton-on-Teeside, England, UK

Onset : April 2018 at the age of 54. Remission date: August 2019. Took methotrexate until December  2019. Remission for me was when I felt normal.

(35)  Cristina H, Vancouver, British Columbia, Canada

Onset: May 2018 at the age of 51. Remission: November 2018.  Classic onset after Maui vacation May 2018. 25 mg Acitretin followed by 4 injections of Tremfya. Started to go into remission Nov 2018. Stopped all meds Dec 2018 except CBD oil and Hair Force vitamins. I have 10 small 1cm spots that are just a non issue compared to where I was.

(36)  Ron O, Mt. Vernon, Kentucky, USA

Onset: May 2018 at the age of 65. Remission date: February 2019. I have been in remission for over a year. It just seems like a bad dream now until I come across some of my photos of redness and swelled up like the ( hulk). I slowly weened myself off the meds that was probably the reason I came out of this mess, or maybe it just went into remission, who knows . Methotrexate and Humira were the ones that seemed to work best for me. Also along this trip of PRP at the same time I had prostrate cancer, with 28 radition treatments . In Jan of 2019 was determined cancer free. I often wonder if these two  conditions were related. The only advice I can give is to never give up !

(37)  Diane F, Williamstown, Pennsylvania
Onset: August 2018 at the age of 58. Remission date: January 2020. I consider myself in remission because I am no longer covered from head to toe as I was for one year and off my meds for six months. Still have it on my right palm. Can live with that.

(38)  Synthia L, Jackson, Michigan

Onset: October 2012 at the age of 57. Remission date: 2019. Med-free in June 2017. Symptom free:2019.

(39)  Sandy B, Imperial Beach, California, USA

Onset: March 2016 at the age of 64. Remission date: October, 2018. I am not sure what I would call my status. I am much better that I have been, though. I have never been as severely affected as many others. There are no new eruptions, but several lingering red, itchy blotches on my arms and shoulders that are better overall, but still flare up.

 

(40)  Mitch M, Novato, California

Onset at age 60 in August, 2011. Remission in March, 2013. One minor patch of red spots in 2017 for about two days on the center of the chest.

(41)  David K, New York City, New York

Onset: September 2018 at the age of 63. Remission: April 2019. Found the right drug. Three months on Stelara–with diminishing dosages and I haven’t had any symptoms since last June.

(42)  Linda Bryant Smith Cartersville, Virginia

Onset: July 2011 at the age of 58. Remission date: April 2013. 2015 small flare. Basically in total Remission. Fairly sensitive to direct sunshine, so use extreme caution (mow grass after 5pm all summer). My overall skin condition never returned to perfectly normal, but close enough for me to feel healthy.

(43)  Barbara B, Anaheim, California

Onset: August 1993 at the age of 43. Remission date: December 1995. John A. has never had a full body bloom since his remission. Only patchy flares like on forehead that last less than a month. He feels very lucky. His skin however has remained very thin and gets abraded easily,

(44)  Honora B, Liverpool, England, UK

Onset: July 1973 at the age of 14. Remission date: 1983. Remission from age 14 to 24 was followed by an acute outbreak. Remission for another 10 years from age 27 (1986 to 1996). A few much smaller outbreaks over the last 24 years lasting just a few weeks. Most of the time I have small areas threatening.

(45)  Lindsay S, Charlotte, North Carolina, USA

Onset: December 2001 at the age of 11. Remission date: December 2006. Accutane to “treat.”First remission at 14. 2nd flare at 15.5, 2nd round of Accutane. Asked to be taken off about six months later. Stress management, lifestyle changes, more homeopathic treatments like cbd lotion, Aquaphor and glove use, etc.


If you would like to share (describe) your version of remission, please Leave a Reply below and it will be added,