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 PRP, feet soles, toenails, and impaired mobility. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.

PRP AND SOLES OF THE FEET

• Thickening of the soles of the feet is common and can be very painful.
• Wear the most comfortable footwear you can find…even if it means bedroom slippers!
• Do not go barefoot and risk infection!
• Wear white and not colored socks.
• Apply creams and lotions liberally. Success reported with Clobetasol and urea lotion
• Use foot soaks to relieve discomfort and help slough off excess skin cells and calluses.
• Simple sandals/flip-flops from Walmart cushion feet during showers and allow for painless showers.
• What worked for Bill M (Plano, Texas): Clobetasol and urea lotion applied to soles nightly
• Advice from Mark A (Medford, Massachusetts): Avoid the temptation of peeling the skin since this could lead to bleeding and infection.

PRP AND SWELLING

• Put your legs on pillows to raise them above your heart while lying down.
• Compression socks that go to knee. We have lots of pairs.
• Elevation: feet above your heart
• Cut out salt
• Ask dermatologist or general practitioner to prescribe water pills
• No Gatorade or Body Armor drinks
• Eat ice chips rather than drinking lots of water.
• Follow a low-salt diet, which may reduce fluid buildup and swelling. Avoid seafood for now because it’s high in sodium.
• Exercise your lower legs by rising up and down on your toes so as to move the pooling fluid.
• Use tight socks like ones you buy for hiking for best support. You can also pack cream under them.
• Wear support (compressi0n) stockings (sold at most drugstores and medical supply stores).
• When traveling, take breaks often to stand up and move around.
• Avoid wearing tight clothing or garters around your thighs.
• Lose weight if you need to.

PRP and TOENAILS

• PRP causes thickening of the nails, and it may become difficult for you to adequately manage trimming them yourself.
• Avoid ingrown nails or trimming too close because of the risk of infection (cellulitis)

How can PRP impact my feet?

Editor’s Note: From soles to toes … to ankles and legs, the challenges we face to body, mind and spirit can be demoralizing, debilitating and de-mobilizing. It can be said that the PRP Community its has a foot fetish of biblical proportions. We want relief. For me it was the nightly application of Clobetasol and urea lotion.

How important is mobility? Few have said it more eloquently than Martin W (Wolverhampton, England, UK) who posted the following on May 6, 2017:

‎Martin W (Wolverhampton, England, UK)

Today I’ve been able to walk, by which I mean putting one foot in front of the other from heel to toe, for the first time since September last year which is over eight months in total. Well today I’ve been able to take a short walk in my local park with only minor discomfort. My feet appear to have only minimal cracking and when they do crack they are healing quickly. The thickened skin on my soles has started to reduce and I can flex my toes without them splitting at the joints too. This is a major milestone for me as I’ve been disabled and just looking out on the world for months. I can remember when I couldn’t get off the sofa and any pressure on my feet felt like I was being cut with broken glass. I’m not ashamed to say that I sat on a park bench and looked at the ducks on the pond and shed some tears of joy. I know that I’m still far from where I need to be but I’m so happy that I finally have some mobility back. Here are photos from last autumn and today to show the changes. I know I say it over again but I’m so thankful for all the support here. SOURCE

Bill M (Plano, TX)

It was bad enough to be bedridden for awhile. Then one day I ventured out of the carpeted bedroom and shuffled across dark hardwood floors leaving white flakes and dust in my wake.

Weeks went by and I ventured out the front door and felt the cold air of winter.

But the first time I was driven to Walmart I needed one of those scooters. It was a defining moment for me. The scooter wasn’t going to be a crutch.

But for nearly a year I did use a handicapped sticker. It was very helpful to get close to the entrance of Walmart or any store for that matter. I kept looking at the date on the sticker and wondered if I should get it renewed in October 2013 — 14 months after onset.

When the time came I didn’t renew the sticker. I added the retirement of my handicapped sticker as a Healing Milestone.

My advice: If it helps, get one. When you don’t need it, get rid of it and do the Happy Dance.

Pam A (Devon, England)

My balance has been useless with PRP.”

Editor’s note: “I never thought of BALANCE as an element of impaired mobility. Learn something new almost every day. Thinking back (circa 2012-13) the balance impairment wasn’t in my head, it was a reaction to the sensitivity of my feet. Even today, I walk fine in my walking sneakers but almost hobble barefooted on hardwood floors. It was the same — but worse — during PRP.”

❏   PHOTO GALLERY OF FEET