The One-Sentence Timeline
Editor’s Note: When telling the story of your PRP journey, NEVER begin with “Once upon a time”. Follow in the footsteps of the Bard of the Doghouse… “It was a dark and stormy night”.
WHAT IF every PRP patient or caregiver took ONE MINUTE on the first day of every month to write ONE sentence that gives an overview of the preceding month. No more than one sentence.
On January 6, 2022, Christopher C (Ottawa, Ontario, Canada), a member of the PRP Facebook Support Group and an unabashed PRP patient advocate, celebrated finding his global PRP community by sharing such a timeline.
JK (Kenora, Ontario, Canada), himself a new member and only four months into his journey, was the first to respond. He wrote:
“Thank you so very much for the detailed account of your journey. This is so helpful for us. Too often when we ask what people have gone through we’re told; ‘It’s different for everyone. Drink lots and keep moisturized’. While that information is totally correct, it doesn’t provide the info many want. Many of us want to see what another has gone through. It helps to gauge what we might expect ourselves.”
Christopher’s 18-month rollercoaster ride began in August, 2021 with a small patch on his left temple. It wasn’t until January that he was officially diagnosed with pityriasis rubra pilaris.
For PRP patients and their caregivers, the challenge we all face is managing expectations. The rollercoaster notwithstanding, Christopher has weathered the storms along the way.
Today is my one year anniversary of finding this group so I thought I’d provide a bit of a progress update. Forgive the lengthy post but it feels right to celebrate this one year milestone!
When I showed up a year ago, I was in pain, lost, terrified, confused, and miserable beyond words. Many of you said encouraging things, that I’d get better, that this isn’t forever, that you had my back. And boy did you ever.
Editor’s Note: Christopher provide photos taken one year apart. One he labeled “January 6, 2021 (MISERABLE; RED” and the other “January 5, 2022 (HOPEFUL; NOT AS RED)”.
I still have a ways to go but I’ve come a long way in that time. And I’m not sure if living with PRP was made easier by living in a pandemic (remote work, don’t have to explain my condition to so many people because we’re isolating) or more difficult (isolated, harder to find quick access to healthcare). I’ll never know.
- August 2020 — Onset with small patch on left temple and two patches on torso
- September 2020 — Peaceful month in retrospect, completely unaware of the shit about to hit the fan
- October 2020 — Very dry and flaky scalp
- November 2020 — Rapid spread starts down face, back, arms, legs; fingerprint no longer opens computer; misdiagnosed with contact dermatitis; declare that “something is overtaking my body”
- December 2020 — Hardening of hands and feet; itchy beyond words; acute stage has started; misdiagnosed with systemic fungal infection
- January 2021 — PRP diagnosis confirmed with biopsy; start isotretinoin; everything is horrible; join PRP Facebook group and find hope
- February 2021 — Spread continues; some temporary easing of redness after 6 weeks on isotretinoin; some hardened skin on feet peels off
- March 2021 — Spread continues slowly; no other major changes; go back to work (remote) after being off for 3 months
- April 2021 — See reduction in redness and feel pretty good; joy short lived
- May 2021 — Worst flare yet; rapid spread; more miserable than I’ve been to date
- June 2021 — Start Cosentyx; in-between month: not terrible, not bad; move to a new home
- July 2021 — Spread concludes (“full bloom”) by covering the last parts of torso; reach 95% coverage; start to notice some clearing on lower legs; Cosentyx is easing but not eliminating most symptoms
- August 2021 — Energy starts to return slowly but still feeling pretty low; skin peeling and shedding a lot; very intolerant to the summer heat
- September 2021 — Start taking daily walks; energy getting much better; stop isotretinoin (no results)
- October 2021 — Bad flare and low point for a few weeks; shedding stops apart from some light dusting; declare acute stage over (9-10 months)
- November 2021 — Lightening of skin begins and inflammation recedes all over; ectropion resolves
- December 2021 — Face starts to clear; stop wearing nitrile gloves for longer periods in the day; lightening of skin continues with large and growing islands of sparing over most of my body
- January 2022 — Stop Cosentyx and start Skyrizi; 30-40% clear
Member’s Only link to Christopher’s original post