A Pityriasis Rubra Pilaris story

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My name is Scott and I’m 42 years old.  I live in SE Michigan and have most of my life.  I have had PRP on my hands and feet for as long as I can remember.  It was not diagnosed until I was 14 and needed stitches on my hand.  The ER doc noticed it and recommended a local dermatologist.  This Dr. had had previous experience with prp, having seen about 5 other cases in his 25 years of practice in the Detroit metro area.  He confirmed it with a biopsy.  He prescribed Accutane and a mixture of aquaphor and lidex. 

 

It flared up just after I turned 14, November 1987, and covered about 60-70% of my body within a few weeks.  I was put into a local hospital in Detroit for two weeks and had many doctors try all sorts of creams and ointments on me.  The nurses would apply various concoctions and wrap me in linen strips.  Some of these burned horribly and had to be removed right away.  I have no idea who conducted this study, but my parents weren't charged for it.  I was there for about two weeks.

It went into remission within a year, but it returned about 18 months (Summer of 1990 I think) later after I received a severe sunburn on my chest.  When the sunburn healed, PRP skin was left where I’d been sunburnt, with no sparing.  It spread from there.  I had the same Dr. and treatment, but the Accutane didn't seem to work this time, and the side effects were worse (especially the cracked lips).  I stopped taking it after a few months.  It eventually went into remission after 12-18 months.  This time it covered about 75-80% of my body and had fewer "islands of sparing."  In some ways this was preferred because a more solid color meant people just thought I was sunburnt (even in the Winter months), rather than “abnormal”.  As I was in high school, appearance was a larger stress factor.

I joined the Army in 1992 and it came out of remission again in September 1993.  The Army derms had no experience with PRP and I had to explain it to them, and recommended the prescriptions I'd been on previously.  The didn't use Accutane, but put me on Prednisone (steroid) and extremely high doses of Vit A (100,000/day), and Vit E.  The Vit A script was so high that the first time I tried to get it filled the pharmacist had to call the Dr. because he thought there was a type with one too many zeros.  It covered 80% of my body and made Army life very difficult, especially on deployments where I didn't always have access to a shower daily or a ready supply of Vaseline.  It remised, but not fully, within a year.  It cleared completed (except for my hands and feet, which have never cleared), a few months later during a month-long deployment to a very hot/humid Louisiana in August.  I'm not sure why, but the environment/climate down there cleared up what remained in like a week or two.

I didn't have another "active" phase until Nov 2014.  It started spreading on my arms, and rapidly spread over the next 6-8 weeks to cover my entire body (almost no sparing at all).  I was laid off from my job just as it was starting to spread on my arms (Dec 2014), and after than it spread very rapidly and at times painfully.  At one point, around March 2015) my calves turned a purplish color and swelled to a level that causes minor pain and I had to wear very low cut socks to avoid constriction.  My feet cracked very badly in the Winter of 2014-2015, and my usual maintenance didn't seem to help much with that.  At times I could barely walk.

 

My shedding is usually pretty minimal, and always has been, compared to other people with PRP that I've heard from.  As long as I shower 1-2 times a day (with low heat and actively scrubbing off the dead skin) and applied Vaseline after.  Every so often I would use baby oil on my scalp if it got too thick.  This routine would typically buy me about 6-8 hours of relative comfort, depending on the environment and my activity level.  A dryer environment or a lot of activity would have me uncomfortable within 2-3 hours and intolerably uncomfortable within 4-6 hours.  At the peak of this active phase I would need to shower 2 times a day (low heat and as quickly as I could).  This was more about getting water into my skin and scrubbing excess skin off my body.  I would then need 2-6 “maintenance” sessions a day; warm water + wash cloth + Vaseline; usually bought me another 2-3 hours of 'relative' comfort.

 

I'd got a new job in late March 2015, after being laid off for 3+ months.  It came with a mandatory 10 hour shift, 4 days a week, and had almost no way to maintain my skin discreetly.  My skin would start to dry visibly after 6-8 hours.  I could maintain my face and arms with water from the bathroom sink and a small jar of Vaseline + Cetaphil I mixed together, mainly to keep up appearances, but the rest of my body was almost unbearably dry by the time I got off my 10 hour shift.  I would rush home and soak in the shower. 

 

During this time I found that using Cetaphil after the shower, then Vaseline, gave me the longest level of comfort.  I tried baby oil (unscented or at least not baby scented) + Cetaphil + Vaseline with a 5-10 minute period between the various applications would make me feel almost completely normal.  This would only last an hour or two, and I found the baby oil shortened the long term comfort level (but felt amazing in the short term) vs. just Cetaphil + Vaseline.

Thankfully, I took a better job in late July 2015 and my skin almost immediately started to get better.  I went to 8-hour days and had more freedom to maintain it (but ended up not needing it).  The swelling and purple tint in my legs went away around June 2014.  The redness level dropped down on most days, though still flared brighter from time to time (possibly related to environmental conditions/humidity or maybe hydration level or diet; I never found a definitive correlation). 

 

Around August 2015 my calves started clearing.  I've noticed clear areas on my thighs and lower torso now (Nov 2015) also.  I can now go about 8 hours without any but the occasional “spot” maintenance (mainly face/ears and forearms/hands), but start to get mildly uncomfortable after about 12 hours.  I can ignore this until bed time most days.  Now I only require a shower + Vaseline once per day, though I still take two sometimes just for extra comfort.

 

I cut out the use of Cetaphil from my regimen altogether around the time my calves started to heal, mainly to save money and because Vaseline kept me relatively comfortable on its own.  Currently, I stay fairly comfortable with 1-2 maintenance sessions a day to keep my skin hydrated until bed time.  If I get lazy and skip a day, on a weekend usually, there's hell to pay and I don't get back to my best for 24-48 hours.  Sometimes, due to variables I don’t understand yet, my skin is very hard to scrub off.  Other times the skin sloughs right off in the shower with a little scrubbing, and I have a relatively easy and comfortable day.

 

I believe stress plays a large part in catalyzing an active phase of this disease for me.  I’m normally very good at managing my stress (and emotions in general), but each active phase started at the same time as my life suffered from strong stressors.  The condition coming out of remission itself only added to the stress, which likely sped up the process.  Once I come to accept PRP as “normal” part of my life, to a point I almost forget about it or forget what life was like without it, it tends to go away.  I’m hoping this slow remission is a full one and that I don’t see it again for at least another 20 years (like last time).