I hate holly more than PRP


by Bill McCue
What does holly have to do with pityriasis rubra pilaris?  Let me explain.

My house has holly bushes; too many holly bushes. Oh, how I hate holly bushes! But they look great from afar. Dark green. Lush green. But up close, they hurt. Let’s face it, holly is a mean spirited plant. It’s a lot like PRP.


Every spring — with great reluctance — I remove the non-holly vegetation that creeps beneath those razor-sharp leaves. The non-holly undergrowth includes a dozen of what I call “baby trees” — each seeking their own place in the sun. Only a half-inch in diameter, I use pruning sheers to trim them down to ground level. It’s not that I’m too lazy to dig up each stalk by the roots, but rather, it’s too painful to spend any time whatsoever under the holly brushes. Holly is evil incarnate. Another similarity to PRP.


It was early August 2012 when my days of doing yard work abruptly ended and with it the annual clearing of non-holly undergrowth. A red spot, the size of a dime, appeared on my forehead. The spot grew in size and spread everywhere. Three months later the diagnosis of seborrheic dermatitis was abandoned and I was properly re-diagnosed as PRP. I began treatment at the University of Texas Southwestern built around a protocol that included acitretin, triamcinolone, Clobetasol and Desonide and other meds for pain, itching and sleep. Remission was not on my radar. PRP was winning.
 
By August 2013, I was mercifully on the road to remission. My acitretin was still at 50 mg per day, but would soon be lowered to 25 mg. By November the prescription would not be refilled. I could see the road sign: “Remission Ahead”. As we say: “A tincture of time and a dash of hope.”
 
By August 2014, I had been “in remission” for four months with no visible symptoms and no meds. It was a time to put PRP behind me and look to the future. Anything was possible. I wanted my life back. I wanted to smile again. I did.
 
By August 2015, I told myself I wanted to get back to working in my yard. However, the sun and Texas heat were an insurmountable deterrent. Instead, I invested my time in PRP advocacy. The PRP Alliance got it’s 501(c)(3) tax-exempt status and joined the Coalition of Skin Diseases and the National Organization of Rare Disorders. I attended dermatology conferences in Vancouver, Canada and Copenhagen, Denmark and helped launch the International Alliance of Dermatology Patient Organization (IADPO). There was time and energy to lobby on Capitol Hill with other dermatology patient advocates during the American Academy of Dermatology Association’s annual Legislative Conference in Washington DC. I even attended the AAD Annual Meeting in San Francisco. Remission wasn’t a bad place to be if you wanted to continue the fight against PRP.
 
By August 2016, even though I had lost muscle mass and stamina during my 20-month bout with PRP, I was feeling like yard work was a real possibility. But it was easy to stay focused on advocacy and with it, more international travel — this time to Vienna and the 25th European Association of Dermatology and Venereology Congress. For me, remission brought with it a responsibility to stay engaged. 
 
It is almost August 2017 and five years since the red dot appeared. This year has already included attending the AAD Annual Meeting in Orlando, FL. As a founding director of IADPO and chair of their 2017 GlobalSkin Conference, it is off to Geneva, Switzerland in September. Most of my time, however, is spent building the PRP Survival Guide and serving a president of the PRP Alliance.  
 
Back to the holly…
This past weekend (July 8-9), I decided it was time to resurrect my pruning sheers and work in the yard. It was hot, in the 90s. Summer in North Texas.
 
As I approached the holly bushes I was struck by the height of the tree that had been growing unattended since 2012. I could no longer ignore thee tree that was reaching to the sky, it’s limbs pushed again the rain gutters and roof.
As I recalled my PRP journey over the past five years. I took my saw and with great delight, cut down an 18-foot tree that had chronicled my PRP journey with growth marks. (See image).
 
I’m not sure if it is an insignificant point of interest or just damn spooky, but the five years I was “active” PRP (2012 and 2013) are dark. 
 
The moral of this tale — if a moral be appropriate — is that PRP is a journey that challenges the body, mind and spirit. How we travel on that road, the people we meet and the relationships we develop are all part of that journey. We travel best when we travel together as a group of kindred spirits. We care. We share. We learn from each other.
 
Parting thought: By August 2018, I’m going to dig up all the god damn holly bushes in my yard. Like I said, I hate holly more than PRP.
 
I hate holly more than PRP

PRP Survival Guide — Peer Review

From the Editor…

Abbas Virji, a retired GP living in London, England, was diagnosed with adult onset PRP in August 2016. As a Health Care Professional (HCP) he asks an important questions abut the content of the PRP Survival Guide.

✽  Has the PRP Survival Guide been peer reviewed and piloted?

✽  Has there been any input from an interested dermatologist?

The simple answer is YES. A more accurate answer would be that the PRP Survival Guide will have both Peer Review and HCP Review.

PEER REVIEW

Since the PRP Survival Guide is based on the experiences and insights of PRP patients and caregivers, I see peer review as the review by PRP patients and caregivers. The entire PRP community is invited to review any and all posts and PDFs made available via the PRP Survival Guide. Questions and comments can be shared using “Leave a Reply” on every webpage, Based on questions and comments, there will be appropriate copyediting to ensure than the content is accurate and complete.

HCP REVIEW

Similarly, every article is available for review by Health Care Professionals. It is important that the PRP Survival Guide be subjected to review by  benefit from review by dermatologists, specialists and general physicians.  While there is no expectation that a handful of HCPs will read everything, we are confident that every article will be reviewed by at east one HCP.

PRP MEDICAL ADVISORY BOARD

Theoretically, every dermatologist who is treating PRP is a de facto member of the PRP Medical Advisory Board. We only ask the following:

✽  Read the post or PDF

✽  Use “Leave a Reply” to Indicate that the post/PDF has been reviewed.

✽  When appropriate, add appropriate comments regarding ANYTHING related to the accuracy of the post/PDF.

✽  HCP comments will be incorporated in or amended to the post/article.

PRP Survival Guide — Peer Review

A Referral to Dr. Google

The definition of remission?


From the Editor...

There does not appear to be an official definition of REMISSION as it applies to pityriasis rubra pilaris. REMISSION comes from the Latin remissionem, meaning “relaxation, a sending back.” If something difficult lets up, you’ll be able to relax a little.
 

Here are some definitions to ponder. When you are finished, use “Leave a Reply” to share YOUR definition of remission?

✽  Remission is a diminution of the seriousness or intensity of disease or pain; a temporary recovery as in “the cancer is in remission”

 Remission is a temporary remission of symptoms

 Remission is a period of time during a serious illness when a patient’s health shows improvement

 Remission is a period of time during a serious illness when there are few or no symptoms

 Remission is a temporary or permanent decrease or subsidence of manifestations of a disease. Gotta love that phrase “substance of manifestations”

 Remission is a state or period during which the symptoms of a disease are abated

 Remission is a decrease in or disappearance of signs and symptoms of PRP.

 In “partial” remission, some, but not all, signs and symptoms of PRP have disappeared, although PRP may still be in the body, e.g., “lurking” and the phrase “smoldering below the surface” come to mind.

 “Complete remission” means that tests and physical exams show that all signs of PRP are gone. Some doctors also refer to “complete remission” as “no evidence of disease (NED).” That doesn’t mean, however, that  you are cured.

 Remission is the disappearance of the signs and symptoms of PRP

What is your definition of remission?
What is your dermatologist’s definition of remission?

The definition of remission?

Chapter 6 — PRP and Remission INDEX

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.

What is the long-term outlook for a PRP patient by type?

I hate holly more than PRP — A Remissioners Retrospective

What is the definition of remission?

What are the issues related to remission?  FEEDBACK

Chapter 6 — PRP and Remission F00

Remission Survey

05.00.03  Pre Remission Survey

On April 8, 2014, exactly 20 months since a pesky red spot appeared on my forehead, I was declared in remission by Dr. Arturo Dominguez. In that moment I transitioned into a phase of PRP that I had only viewed from afar. My want to know became an immediate need to know.

I sent an email to 152 PRPers who had something in common. Each has submitted a 2014 PRP Census form and indicated that their status was “in remission”

In my instructions I included a promise. I told them that a response from 100 of the 152 would qualify as a bona fide Remission Survey. I suspected, however, that a 66% response rate was dubious at best.

I also told them that if there were 20 responses, I would write a decent article for the June 1st issue. The final tally was exactly 20. A promise is a promise.

GOAL OF THE SURVEY

There was only one goal: to conduct a pre-survey of PRPers in remission to see how they reacted to and answered specific questions. Were the questions confusing? Did the responses stay focused on remission. Did they take the opportunity to provide an overview of their entire PRP experience.

The fact is, they did all this and more. The result is a redesign of the survey with instructions to intercept confusion and maintain a focus on the subject.

WHAT’S YOUR REMISSION DATE?

I discovered that the month and year is all that is needed. Moreover, if a PRPer has been in remission for over five years, just the year of remission is fine.

WHO MADE THE CALL?

Three obvious options: You, Your dermatologist, Both of you. However, there was enough unsolicited storytelling to justify adding a “comment” field.

Norma Miller—in remission since 07/2007

I made the call when I felt sweat trickling down by back – it felt wonderful after not sweating for 18 months!  I used to hate hot stick humid days and now I love them as they remind me that I don’t have PRP.

ANY RELAPSES OR FLARE-UPS?

When the answer was “no”, that was that. When the answer was “yes”, the comments were always enlightening.

Brenda Steiner—in remission since 03/2005

I had two minor flareups.  Both occurred after I took several rounds of antibiotics for severe sinus and ear infections.  The first flareup was confined to my ankles and feet, the second to my forearms, elbows, shins, and back of the knees.  In both cases, I had the awful itchy red blotches with islands of sparing.  Luckily, these flareups did not last long.—

DID YOU REGAIN YOUR ENERGY?

The response here was fascinating. 81%% regained their energy; 19% didn’t. Again, the comments were always fascinating.

Ed Dunn—in remission since 07/2011

I used to play rugby, now I don’t have the energy.

Elise Latter—in remission since 05/2009

I think I have more energy now than pre-PRP
I exercise more and appreciate my health more than I ever did before.

Gina Drury—in remission since 12/2008

Energy came back, albeit I do still get tired more than I would normally expect to get at age 43.

Ken Ausborn—in remission since 01/2014

I was a football official for 30 years.  I can hardly jog a quarter mile now.

Tom Holder—in remission since 10/2008

I am stronger today than I have ever been.  Since remission, I work out 4-6 times a week.  I had my annual physical recently, and was declared in the best shape my doctor has ever seen me.

DID YOU REGAIN YOUR LIFE?

That may be a question that every Newbie and Roadster wants to ask.  Again, the responses offer important insight regarding Quality of Life issues.

Andy Zarow—in remission since 10/2005

Once I started sweating again I knew I was on my way back.

WHAT’S YOUR DEFINITION OF REMISSION?

For the most part the responses reflected the unique version of PRP.  It seems that the general consensus was not having the symptoms that were the most painful in terms of body, mind and spirit.

David Steckinoin remission since 11/2008

My skin was back to normal and I could sweat.

Tom Holderin remission since 10/2008

A return to normalcy; physically, mentally, and emotionally. No more regular visits to the dermatologist No more, “well, let’s try this treatment and see if if does any good.” NO MORE!  I have my life back, and I’m doing more today than ever before to live it to the fullest.

Vicki Rossin remission since 01/2013

I consider my remission as the day that my four-year-old grandson, Steven, said “Grandma your face is all white again!” He is still my biggest supporter.  Every once in a while when we are playing badminton or basketball or swimming in our pool, he will say “Grandma, remember when you were all red and you couldn’t play outside with me?  I’m glad that you’re white again”.

Within a few weeks the updated Remission Survey will be emailed to 217 PRPers already identified as in remission. Another 385 PRPers whose status is unknown will also be invited to participate.

In addition, when a PRPer completes the newly revised PRP Census form and indicates that they are in remission, the questions from the Remission Survey will “suddenly appear”. It’s a smart survey!

Published in On the Road, June 1, 2014 pages 10-11

What are the issues related to remission?

Editor’s Note:
It is generally accepted that 90 percent of all patients diagnosed with pityriasis rubra pilaris will achieve remission. Unfortunately, there is no universally accepted definition of remission. For purposes of discussion, we will define remission as “symptom-free and med-free”.  

There has been no research regarding PRP and remission. The PRP community must reach out to PRP patients who are in remission and document that part of the PRP journey.

✽     Are you “active” or “in remission”?

✽     What is your definition of remission?

✽    What was the duration of your PRP journey — from onset to a declaration of remission.

✽    How long have you been “in remission”?

✽    Are there still remnants of PRP, e.g., scars?

✽    Have you suffered any relapses or flares while “in remission”?

✽    What pre-onset aspects of you have NOT returned to pre-onset you?

There is certainly more that we can ask, but we must start somewhere. Please use “Leave a Reply” at the end of this webpage to share your remission-related experiences and insights.

In April 2017 there was a discussion among PRP Facebookers on this subject.

Abbas V — England
PRP is one of the most demanding diseases i can think of. it takes over ones life so profoundly and leaves very little space to carry on normally. almost every walk is affected in the consumption of personal freedom. i am therefore asking all those in remission, what was the transition to “normality” like? From being so dependent and so much in a “sick role” to be released from prison? is that what one feels? sick role is where emotionally one feels committed to the self care and enters into a relationship with the disease when other things virtually go out of the window..almost a good excuse to neglect other things in life. when one is out of prison suddenly all the normal living responsibilities might temper the elation? so was it an emotional up and down? i know this is very personal but i am fascinated to hear if anyone feels brave enough to pour forth!!

Arthur B — New Zealand
 I think i am in remission whatever that means.I am sure i have remission with remnants my skin is almost back to normal but my body is still very sore mainly muscles.Still have very little energy.Am weaning off acitretin will be on 20mg twice a week next week.I have had PRP for about 12months and have only had acitetin in meds.

Tania T — Germany
“Remission” is a strange word, I say this as we felt it had been reached long before the dermatologist said my hubby was there. Remission to our dermatologist was “medicine free time”,. For  my husband, however, it was when he achieved independence — the freedom to do the things he once did, again!

✽    Remission – When he was able to walk without the pain, when he was able to pick up a screw and feel it between his fingers!

✽    Remission – when he looked in the mirror and thought, actually I look better again! Im happy to go out!

✽    Remission was when he felt he could hold me, be intimate with me without feeling he needed to apologise for the way he looked and the way his skin felt.

Life after PRP, well it certainly changes the people involved. Its always there in the back of our minds, its left its own scar. As the carer I think PRP has affected me just as much if not more than Julian. Maybe because this disease steals your life, it is not hidden from the world like many other diseases, its there on display for the world to see.

So Abbas, in our/my opinion, we were in prison, we were lucky we got probation fairly quickly (time served for good behaviour) however we both carry the prison number tattoo.

Brenda M — England — England
For me remisson is a far off land, Adult onset Type 2 resolves on average in 20 years. I’m 4 1/2 years in. However, as I gradually resumed ‘life responsibilities’ to me they came as a joy. A joy that I could see the progress, see my life returning, albeit changed and more restricted than before but at least I have an existence I can call a life, compared to the prison of PRP in full flood. I know it can flare again but it will not rob me of hope again, nor be bad enough to entirely wipe out my life or my personality.

Karen G— England
The onset was so fast I felt totally overwhelmed. The remission was a gradual process and any little improvement was a light at the end of the tunnel. One day I saw a photo of how I looked during PRP — no hair, red and defiantly not happy. That made me realise how far I had come. I then started on keeping my self fit and healthy, and on the whole I have continue that for the last six years.

Source (access to this post requires PRP Facebook Support Group membership): https://www.facebook.com/groups/15865278115/permalink/10155090761763116/?match=cmVtaXNzaW9u

Please us “Leave a Reply” to share your remission-related experiences and insights.

05.00.02  Remission

What is my long-term outlook based on Type?


Editor’s Note: The long-term prognosis for PRP is not set in stone. There are some guidelines that dermatologists feel comfortable in treating as Gospel.

Suffice it to say that there has been insufficient research to be able to predict when Type 1, 3 and 5 will “run it’s course.”

Adult Onset PRP

Type 1 — Classical Adult Onset PRP: Good prognosis with 80% of patients going into spontaneous remission within 3 years. After remission, relapses are uncommon

Type 2 — Atypical Adult Onset PRP: May persist for 20 years or more

Juvenile Onset PRP

Type 3 — Classical Juvenile Onset PRP: Spontaneous remission within 1 year

Type 4 — Circumscribed Juvenile Onset PRP: Long term outcome unclear but possible improvement in late teens

Type 5 — Atypical Juvenile: very persistent

Other Onset PRP

Type 6 — HIV-Associated PRP: Disease tends to be resistant to standard therapies. No further  timeframe is suggested.

http://www.dermnetnz.org/topics/pityriasis-rubra-pilaris

 

SG 05.00.01