PRP Survival Guide

A sleeping cat

Issues related to the lack of energy

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 affected energy and fatigue. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.

How can PRP affect my energy?

Bill M (Plano, TX)

My “get up and go, got up an went” in October 2012, a few months after the onset of symptoms. I don’t know if it was the inflammation growing more intense with each passing day, the prednisone I should not have been prescribed for the seborrheic dermatitis I didn’t have, or the acitretin I was finally prescribed once PRP was “officially” diagnosed.

All I remember was being consumed by fatigue. It was a very lonely time — days filled with nothing. Then I made an astonishing discovery: the “on switch” on the back of my iMac. My computer was my ticket out of the despair of fatigue.

It was April 2013 when I sat down at my computer, turned it on, and logged into to the PRP Support Group archives. I began reading emails from fellow PRP patients and their caregivers. It took me several months, but I reviewed over 29,000 emails going back to November 1997. I also captured over 1,500 email addresses and snippets of information, e.g., onset date, onset age, initial symptoms, misdiagnoses, date of diagnosis, and the names of the dermatologists involved in diagnosis and/or ongoing treatment.

My PRP-related fatigue was the reason I sought refuge in my computer. More importantly, my research turned out to be the best therapy for what would have become debilitating depression.

Fatigue and loss of energy is a common symptom of PRP. Your “get up and go”  will return.

Science Daily — How Inflammatory Disease Causes Fatigue

“New animal research may indicate how certain diseases make people feel so tired and listless. Although the brain is usually isolated from the immune system, the study suggests that certain behavioral changes suffered by those with chronic inflammatory diseases are caused by the infiltration of immune cells into the brain. The findings suggest possible new treatment avenues to improve patients’ quality of life.”  Full Story