From the Editor…
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Signs & Symptoms
The terms “sign” and “symptom” are not redundant. A SIGN is subjective, e.g., pain, itching, fatigue. The PRP patients must share that information with the dermatologist, dermatology physician assistant or dermatology nurse. In contrast, a SYMPTOM can be observed by others, including healthcare professionals. The following is a list of SIGNS and SYMPTOM that define the PRP experience.
Pre-onset Signs
Mild signs include dandruff and crusty scalp, limited red patches or scaling of the skin, e.g., dime-sized red spot” on forehead. Duration varies from patient to patient. At some point patient determines that intervention of a healthcare professional is warranted, e.g., red spot has doubled in size in less than two weeks.
Onset of Symptoms
Depending on the advance of inflammation, a general practitioner or dermatologist will see symptoms including pink, red, or orange-red scaly patches on your skin. The patches are usually itchy. You may have the scaly patches only on some parts of your body. They most often occur on the elbows, knees, hands, feet, and ankles. The skin on the palms of your hands and the soles of your feet may also become red and thickened. The scaly patches may eventually spread over the entire body. (1)
Cracks may develop which can be painful and make walking and using the hands difficult. The nails may become thickened and discoloured at the free nail edge and may show linear black streaks (splinter haemorrhages). The hair may thin considerably. (2) Shivering, heat and fluid loss may occur if the rash covers large areas of skin. (3) The onset of PRP may be further exacerbated if a misdiagnosis of psoriasis or eczema, for example, results in an improper treatment option. (4)
Acute Stage Signs and Symptoms
The dermatologist will be able to see the symptoms of a body engulfed by dry, red and flaking skin, swollen feet and legs and cracked and bleeding feet. There may be serious issues related to impaired mobility, eyes and vision, and dexterity. The PRP patient will see signs of PRP from a different perspective, e.g., pain of motion, unrelenting itch, the impact of cold, heat and sleep deprivation. The Acute Stage poses the greatest challenge to body, mind and spirit and can last less than a month or months longer. This is the time in the PRP journey that PRP patients and caregivers should seek support from patient support groups. It is also a time to address issues of depression. (4)
Management Stage
After the Acute Stage, the journey of a PRP patient takes on a new focus – mitigating symptoms. All the potential irritants are waiting on the roadside, e.g., joint pain, clogged ears, disability claims, etc. While 90% of the PRP patient population can look forward to full remission within one to four or five years, the timetable is not certain. Those diagnosed with Atypical Adult Onset and Atypical Juvenile Onset, the chronic versions of PRP, must develop long-term coping skills. For everyone, the daily routine associated with medications, moisturizing and dealing with the unpleasantries of this skin disorder cannot be ignored.
Remission & Healing Milestones
There does not appear to be an official definition of remission as it applies to pityriasis rubra pilaris. For some it means no meds, no signs and no symptoms. Others are told they are in remission by their dermatologist during their last clinic visit. Other believe that sustained improvement with an acceptable quality of life is all that is required for a declaration of remission.
The PRP community, however, has adopted a more celebratory approach with recognition of healing milestones, e.g., the return of sweat, the first trip to Walmart for groceries, dark hardwood floors that don’t need hourly vacuuming. These milestones are signs of healing that PRP patients and caregivers feel and symptoms that everyone else observes.
(1) Healthline.com. Pityriasis rubra pilaris. http://www.healthline.com/health/pityriasis-rubra-pilaris#causes3 Reviewed June 9, 2016. Accessed August 7, 2017.
(2) DermNet New Zealand. Pityriasis rubra pilaris. www.dermnetnz.org/topics/pityriasis-rubra-pilaris/ Updated October, 2015. Accessed August 7, 2017.
(3) British Association of Dermatologists. Pityriasis rubra pilaris leaflet. http://www.bad.org.uk/shared/get-file.ashx?id=116&itemtype=document Updated May 2016. Accessed August 7, 2017.
(4) PRP Survival Guide. Chapter 1 – The Basics. http://prpsurvivalguide.org/2017/05/19/yayaya/?trashed=1&ids=3 Accessed August 7, 2017.
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2017 NORD PRP Report Revision