Pityriasis Rubra Pilaris (PRP) Community

Meet, discuss & support other patients or families living with Pityriasis Rubra Pilaris (PRP). Contribute to topics, or just share what's on your mind

BillMcCue
moderator

How long did it take for your dermatologist to diagnose pityriasis rubra pilaris?

With an estimated incidence rate of one in 400,000, the diagnosis of PRP is subject to delays. Biopsies are inconclusive. Misdiagnoses of psoriasis, seborrheic dermatitis and other skin maladies too often delay the start of effective treatment plans. The diagnosis of PRP typically requires a combination of clinical observations and a biopsy. The most timely diagnoses seem to occur when the dermatologist recognizes the symptoms and directed the dermatopathologist to "consider" PRP. What is your PRP diagnosis story? Was your dermatologist PRP savvy?

For additional information about "biopsies as a diagnostic tool for PRP", please go to: http://prpalliance.com/2016/04/11/biopsies...

christinegnther
moderator

Leider hatten wir nicht das Glück am Anfang schon auf einen PRP erfahrenen Dermatologen zu treffen! Die erste Hautärztin hatte keine Ahnung und ihre Diagnose schwankte von Neurodermitis zu Psoriasis. Leider hat sie erst sehr spät ihre Möglichkeit genutzt, um uns ans Kinderspital der Universität Zürich zu überweisen. Wochen mit schmerzhafter Cortison-Behandlung verstrichen und Mollys PRP wurde immer schlimmer. Dann endlich entschied sie sich zu einer Überweisung. Ich rief dann täglich beim Kinderspital an um möglichst rasch einen Termin für Molly zu bekommen. Beim ersten Termin im Kinderspital brauchte die leitende Ärztin der Kinderdermatologie gerade mal 5 Minuten um die Diagnose PRP zu stellen, was dann auch durch eine Hautbiopsie bestätigt wurde. Der ganze Albtraum begann Im Juli/ August 2013 und im Oktober 2013 erhielten wir die korrekte Diagnose. Eine kurze Zeit im Vergleich zu andern PRP Betroffenen - eine unsäglich lange Zeit für uns als Eltern zusehen zu müssen, wie unser Kind leidet und wir ihm nicht helfen können.

At first I was diagnosed with psoriasis, it was in the summer of 1982, and I guess at that time, pityriasis rubra pilaris was even more unknown. It was not until 1992 when I changed doctors, curiously public medical service, who made me a biopsy and confirmed his diagnosis, which was PRP since the first visit. Now I handle my condition pretty well. It is not easy, but I keep my complaining to myself.

My son is 19 and has had PRP since he was about 5 years old. Only diagnosed this year but even then they think could be Erythrodermic Variabilis Progressiva due to the fact that the islands of sparing migrate on his body. He had two biopsies and it took us ages to get the results. I cannot stand the way derms here treat their patients. You pay $200 and they either sit down and google or have this reallly arrogant way of treating you like an idiot. I do my own research and am always open to new ideas - currently trying kigellia extract for example with some success. With derms in Perth - its drugs. No discussion and I feel no real compassion - they see the symptoms but are less interested in any underlying issues such as food intolerance or stress. Up to now my son been ok with emollients though I would prefer him to see an integrative physician over a derm, soon. I do beive the gut biome important - why isnt stool examined, saliva, blood, hair...I think PRP is epigenetic but not one derm has discussed triggers or the immune system per se. Its a 20 minute consult tops and you walk out with a script.

I have had it on my feet and hands for most of my life. I'd say feet for as long as I could remember, and hands from around the third grade. I was not taken to a doctor or dermatologist for it as a child until I got into an accident on my bike at age 13-14 and the doctor stitching up my hand recommended a derm. This was around 1987-1988 so it's surprising he did diagnose it correctly as PRP, and with only one biopsy. Dr. Jay Victor was his name, a U of M alumni, and a practicing derm for 25+ years at the time. He'd seen about 5-6 cases of PRP during that time. He had me admitted to, then, Haper-Grace Hospital in Detroit for about 2 weeks so a bunch of docs could try new things on me. None of them helped, but I can only assume they learned more about the disease from that time. It was fully paid by someone, because my parents didn't have to pay for it.

Thanks Bill, for this update. If anyone wants to help get dermatologists 'on board' with PRP, there is a way! Thomas Jefferson University Medical College in Pennsylvania is setting up an international PRP patient registry as part of a research project by Dr. Nick Ross.

Please read more at the PRP Alliance website. There's a link where you can enroll in the study by doctors trying to find how common it is and what the collective symptoms are (this is data collecting only - you aren't required to be seen or treated or poked!).

http://prpalliance.com/2016/04/18/the-rese...

Sincerely,

Mary Holman
Novato, California, USA

I think I was fairly lucky in that I was diagnosed fairly quickly. The first symptoms began to emerge in middle May 2016. The symptoms were pretty mild then, mostly itchy scalp and a couple small spots on my face and a couple on my chest. I went to my primary clinic and was diagnosed with guttate psoriasis, prescribed topical steroids and 12 days of prednisone.

It got steadily worse and my face went crazy. I was referred to a dermatologist then. Initially seen by a PA at the derm office who diagnosed me with psoriasis and put me on stronger topical steroids and suggested light therapy.

Still spreading, but my face was unbelievable. They did a biopsy which came back as spongiotic dermatitis. A bunch of testing (CBC, metabolic panels, hep B and hep C screen, trying to rule out lupus, ANA and ENA tests, single and double stranded DNA tests) Everything was coming back normal. Was given a Kenalog shot, but that made no impact, so the PA asked me to make an appointment with the dermatologist to get his take on it.

July 11th of 2016, I had my first appointment with him and he diagnosed it right away and took another biopsy to have it reviewed by a dermo-pathologist to look for PRP. So, all in all, it took about two months to diagnose which doesn't seem to bad compared to others.