A black and white logo of the word allies.

PRP and Progress

/ PRP Advocacy / By



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 can harvest that knowledge.
Share what you have learned about PRP and PROGRESS as a patient or caregiver. Share what you have been told by your dermatologist? Share articles you feel might be worth reading or websites worth visiting. Use “Leave a Reply” to share.

How do you know if you are getting better?


Bill M (Plano, TX)

IMHO – Sometimes it takes a major healing milestone to recognize progress.

For those of us who suffered through an Acute Stage, “getting better” was relatively easy to recognize because there was simply more to get better and more to see.

In my version of PRP the problem was a combination of swollen feet, encased in thick skin, cracked and bleeding. After three agonizing months of wearing backless slippers and perfecting the C3PO shuffle, I was surprised to see that my “retired” sneakers fit again. While my mobility was boo longer impaired, there was still a laundry list of challenges ahead. Everything else in my life SUCKED.

It had taken two months to go from a red spot on my forehead to the Acute Stage and another 3-1/2 months to get to my Sneaker Stage. It took over a year to be symptom-free and med-free with ups (Healing Milestones) and downs along the way. Remember:

❏» Progress is often seen best in a rear view mirror. If you think you are getting better, you probably are.

❏» TAKE PHOTOS to help you remember WHERE you were and WHEN you were there.

Mark R (Grand Isle, Florida)

This my wifes FB page. I have PRP. The thing about PRP is you get better so slowly you hardly notice. I’m 84. I’ve Had this curse now for a year and half. I still have the rash and the intense itch, the uncomfortable clammy feeling when getting the chills. BUT!, my stamina is getting better I can function a lot better and tolerate it easier. I honestly feel I’m on my way to remission.-maybe six months to a year- So hang in there and tolerate it your going to make it.

Murray R (Surrey, British Columbia, Canada)

“The thing about PRP is you get better so slowly you hardly notice” and I would add “It comes on so fast you and everybody else can’t help but notice!” Glad to hear you are doing well. It took me a long time to get my stamina back as well.