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.
Please use “Leave a Reply” to share your “Healing Milestones” with those who are still on the journey via an email to: editor@prpSurvivalGuide.org.
It has been said that the treatment of PRP includes a “Tincture of Time” and a “Pinch of Hope”. If that is true, then a “Healing Milestone” is that “Pinch of Hope”.
FROM THE GLOSSARY
There should be a healing milestone for every symptom of PRP and every indignity we suffer. The journey can be so long and unrelenting that we need to recognize markers along the way. Here are a few.
❏ “Official”diagnosis. No more guessing
❏ Going back to work
❏ Sleeping through the night (11 PM to 7 AM)
❏ Feet no longer encased in thick skin
❏ No longer needing — or wanting — a handicap placard.
❏ Drive myself to Walmart
❏ Drive myself to Walmart and NOT use the electric cart for handicapped customers
❏ Hearing no longer impaired. Had “jelly beans” (skin and wax) removed by ENT specialist.
❏ Not refilling a prescription for acitretin after 12 months.
❏ Scheduling an ANNUAL clinic visit rather than a three-month or six-month return.
❏ Sweating again
❏ Taking the first pain-free and nearly tingle-free shower in ages
❏ Picking up a credit card off a hard surface
❏ Hands no longer require gloves
❏ Opening a jar of Vlasic sweet relish without a pair of pliers
❏ Opening a pop-top soda can without a screwdriver
❏ Retiring the no-black slippers and returning to the sneakers after three months
❏ No longer need a sauna suit
❏ Fingerprint activates phone lock once again
❏ Fingerprint allows reentry to Universal Studios
❏ Actually needed a haircut (lost hair for months)
❏ Actually needed a manicure (lost fingernails for months)
❏ The realization that there was more of my Old English Sheepdog than me after sweeping the hardwood floors.
❏ After two years of monthly clinic visits, dermatologist said, “See you back in three months.”
Anyone with a healing milestone to add to this list should send an email to: editor@prpSurvivalGuide.org.
Eric S— San Luis Obispo, CA
I went from using a tub of Triamcinolone to a tube. Editor’s Note: When I was prescribed Triamcinolone at the beginning, the pharmacy gave a a tube. I laughed. Hard to stretch a tube over 30 days when you are 6 foot 3 inches and weigh 245 pounds. Got a new prescription for a 500 gram tub and, using a digital scale, allocated 16.67 grams at bedtime. PERFECT.
Donald G — Burghill, OH
Yesterday (March 20), 2019) marks one Milestone on my journey since last summer/late October with PRP.
During my UVB light treatment, 30 minute circuit workout followed with a 10 minute bike ride(at least 3 times a week), some spots were sweating for the first time since September. The top of my forearms, back of the neck (even the hair was wet!) and mid back had some wetness!! My wife, Lisa was there as well to help celebrate!!
It’s a beginning. This PRP journey is heading (slowly) in the right direction! Lots of people must of thought we were crazy smiling, high five-ing and Lisa touching to make sure that the sweating was happening. It was a “What’s-the-next-goal-to-achieve” moment. We’ll see what happens at the next workout!
Tamara S — Albuquerque, NM
“I remember the day when I could actually feel the clothes on my back! It was heaven! (June 25, 2017)
Karen B — North Wales, UK
Bill M — Plano, TX
ONSET DATE @ AGE: August, 2012 at 66
❏ Milestone #1 (November 28, 2012): “Official” Diagnosis. Took dermatologists 3 months and 4 biopsies to conclude that I had pityriasis rubra pilaris. IMHO — The healing process can’t begin until there is a diagnosis that combines clinical observation with a supporting biopsy.
❏ Milestone #2 (Second week of January, 2013): Swollen feet returned to their normal size and I could wear my sneakers.
❏ Milestone #3 (January 20, 2013). Walked 5-1/2 miles on the warm sand at Panama City, FL with my son, a Recon Officer with the USMC. He was assigned to the Naval Station and Underwater Combatant Training.
❏ Milestone #4 (July 2013): Return of sweating. One day I noticed that my knee cap was “leaking”. It was as if my sweat had been trying to get out for 11 months can final found an exit on my knee. Within a few weeks I was sweating profusely in the summer heat of North Texas.
❏ Milestone #5 (date unknown). I picked up a credit card that had fallen on the floor at Walmart. Having lost my nails many, many months earlier, a dropped credit card meant that some poor, unsuspecting cashier would be forced to learn about pityriasis rubra pilaris as he/or she retrieved the fallen plastic.
❏ Milestone #6 (November 2013): After nearly 12 months of taking acitretin (25mg to50mg per month), I didn’t refill my prescription. By then I had also stopped using triamcinolone, Clobetasol® and Desonide®
❏ Milestone #7: (April 8, 2014). At the end of a clinic visit with Dr. Arturo Dominguez, my dermatologist at University of Texas Southwestern, I was declared “in remission” which I interpreted as “no symptoms and no meds”. The duration of my version of PRP — my PRP journey was 20 months.
Jan T — Ringwood, New Jersey
After 10-11 months, my hands and fingers are almost all the way back to normal! Today, I peeled a label off a gift. Last week, I was able to twist off the top of a water bottle with my hands. (I still keep grippers in kitchen and bathroom for things I can’t quite open alone.) Three weeks ago, I put my wedding ring back on. A month ago, I was able to mostly button buttons, zip zippers, and go without the blue gloves most days. I reserve them for dirty jobs, or when I start to get too dry and cracked overnight. There was a time when I though it would never happen. PRP began at the end of Sept 2016, and my hands became fully affected mid-January 2017. (December 13, 2017)
Murray R – Surrey, British Columbia, Canada
Milestones come in many different ways and forms: the first time you start to sweat; your feet now allow you to walk without pain; you finally found a shampoo that is helping with the incessant flaking; you discover that sleeping in a onesie is comfortable; some texture on your fingers again; edema is starting to abate and you can wear your normal footwear; you can see clearly now etc, etc.
A different type of milestone occurred a year ago. It was not a healing milestone, but rather a turning point in my PRP journey. It was in finding the PRP Facebook Support Group site and reading the phrase that hit home then and still hits home today – “You are not alone.” I remember the feeling I experienced when I first read that for at the time I was, as I noted to myself, “Adrift on a sea of loneliness and ignorance.” All of a sudden I was not alone and all of a sudden my ignorance could be overcome by reading what others had to share. What a wonderful feeling that was! And I even learned how to spell pityriasis rubra pilaris without having to look it up – pronouncing it was another thing however but I’m getting better at not tripping over my tongue when doing so today.
My second non-healing milestone second was when I decided to make my first post on our site, a year ago today! At the time a somewhat difficult thing to do. Exposing my problems to people I didn’t know; had never met; talked to, etc. I was hesitant to say the least. I am struck by how important it was to make that first post for with the help and advice and, perhaps most importantly, the friendships I have made with other members and, for the first time since I was 11 years old, having a pen-pal (Hi Tierney!) I have come so far. My journey to remission isn’t quite there yet, but I know it will come. (November 14, 2017)