From the Editor
The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge.
Share what you have learned about the ways PRP has impaired your dexterity. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.
How has PRP impaired your dexterity?
Bill M (Plano, TX)
I don’t remember when I actually started dropping things around the house. As my PRP progressed, however, the skin on my hands thinned, my finger nails started to disappear and my fingertips became sensitive.
Have you ever boiled cranberries to make cranberry sauce? The cranberries actually pop open and the mini-explosion leaves a scar in the shape of an “X”. For months I had 10 finger tips with what felt like 10 paper cuts.
Eventually, I bought a pair of gloves — not the nitrile gloves I wore at night, but a $10 pair of gloves from Home Depot. These weren’t the heavy work gloves used in yard projects. They were, in fact, leather and padded with Spandex stretch panels.
Today, three years after remission, my hands are back to normal (pre-onset). However, I still wear my PRP gloves.
POSTED BY TIERNEY R — VIRGINIA BEACH, VIRGINIA (MAY 7, 2019)
At what point does the “grip” of your fingertips come back? I can’t hold silverware tight enough to keep it in my hand, nor am I able to get my credit card out of my wallet. Does anyone else have this malady? Original Post
Anita P — East Fultonham, Ohio
I’ve just now being able to get my drivers license out of my wallet. People stared at me licking my finger to get traction in the little slot to pull it out. Before that people felt sorry for me and actually read it in my wallet. Something the never do. But they witnessed the difficulty I was having because they didn’t believe me when I told them I couldn’t get it out. I had to have it out for my medical records in Florida and the man standing behind me took it out for me. The person in the window couldn’t help me.
Bill M — Plano, Texas
A response to an post by Tierney R (May 6, 2019)Not a clue when my grip returned. One day I tried to open a jar of relish. The Classic relish jar is particularly stubborn to open. When my grip failed, I used a contraption to remove the lid. Not too long after that I couldn’t even squeeze the contraption. All I could do was to add the inability to open a relish jar to the growing list of indignities that had been amassing, e.g., picking up a credit card on the floor with no fingernails.
After a passage of indeterminate time, however, I stood over a jar of relish on jar on the counter — daring me to open it without a mechanical aid. I focused on the lid. Grasped the lid. Turned the lid. Pooooosh. The sound of victory. I didn’t check the time or date. I just chalked it up as one of many healing milestone I encountered with every passing month.