From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.
Share what you have learned about the impact of PRP on hands, palms, fingers and fingernails as a patient or caregiver. Send your comments to firstname.lastname@example.org.
On Tuesday, March 24, 2014 at 3:40 PM (CST) I posted a single question to PRP Support Group subscribers (Emailers) and PRP Facebook members (Facebookers):
When I was a Newbie (November 2012 to August 2013) I had many questions but never got the A to Z answer I sought. Typically I would get A, B, F, L, R, S and W. What I learned would certainly help, but I was always left lacking a full and cogent A to Z response.
So, my Quick Question last Tuesday was asked to solicit anecdotal information from the real PRP experts—YOU—to help me determine the scope of such an article for Newbies. Incidentally, my Newbie-ness ended on the one-year anniversary of my PRP onset. I was out of Hell & Agony but still on a very long on-ramp to the road to Remission.
TOTAL NUMBER OF RESPONDENTS: 46. Emailers: 21 (45.7%); Facebookers: 25 (54.3%)
VERBOSITY: 2,826 total words—Emailers: 1,508 words with an average 72 words per PRPer; Facebookers: 1,318 words with an average of 53 words per PRPer. We know how to chat regardless of the communication platform.
SUBTOPICS: This is the information I found most enlightening. Consider the following:
✽ Descriptive words: thin, weak, thick, super thick, too thick to cut, ugly, bent upward, curled down, peeled off, fell off, gnarly, inflamed nail bed, disappearing cuticles, detachment from the nail bed
✽ Color: yellow, yellowish, yellowish-brown
✽ Pain: from pressure, from snagging, from nail lifting off of the nail bed, hang nails
✽ Appearance: ridges, sharp ridges like razor blades, pits, splitting, splinter hemorrhages, dips, lines, cracked, brittle
✽ Impact on daily functions: opening jars, opening individual string cheese snacks, inability to pick up a debit cart at the Walmart checkout stand and asking the cashier to help you which provides the opportunity to tell her that you have a non-contagious skin condition called pityriasis rubra pilaris and that she is in the presence of one of the 792 active PRPers in the United States, one of the 65 in Texas and one of the 16 in the Dallas/Forth Worth Metroplex. The next time you see her she says, “Hi Bill”.
✽ Outcome: grew back slowly, grew back quickly, normal like before PRP, different
✽ Helpful Hints: Nutrile gloves, emery boards, a variable speed Dremel rotary tool on low speed with a 1/2 inch, 120-grit or finer sanding drum. (Extreme Caution Required and for legal reasons, not recommended by yours truly)
✽ Cause of fingernail problems: Soriatane/acitretin, PRP
SUBTOPICS NOT DISCUSSED BY RESPONDERS
✽ Reaction by others and the negative impact on self-esteem
✽ Medical treatments to accelerate growth
✽ Effective ways to protect nails
A Newbie needs to know that not all of the fingernail experiences referenced above happen to one person. It’s like a combination plate at a Mexican restaurant: you can pick three, e.g., enchilada, taco and a beef burrito. Unfortunately, PRPers don’t get to choose.
There was a reason I never got the A to Z answers I sought. PRPers don’t experience A to Z. We get A or B or F or L or R or S or W or some combination. We never get A to Z.
Thanks for helping me get closer to the A to Z of fingernails.
Feedback from the PRP Facebook Support Group
Active Post started by Tierney R on June 19, 2017.