Pityriasis Rubra Pilaris (PRP) Community

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How long does it last

I had my first small patch at the age of 24, I am now going to be 51 next month and it has just continued to progress, so I have literally had PRP for almost 30 years, how long can it last ? Has anyone else had it this long with no relief in sight ?

BillMcCue
moderator

Based on an onset at age 24, you have adult onset. THEY say that 80% of PRP patients diagnosed with Adult Onset PRP enjoy "spontaneous remission" within 3 years. I have seen other THEYs predict remission within 3-5 years. I was lucky and declared in remission after only 20 months (acitretin for 12 months, and "tincture of time")..

Are you ongoing symptoms FULL BODY ore localized in a few areas? If you are among those PRP patients diagnosed with Atypical Adult Onset (Type 1), you would be told that THEY say symptoms "may persist for 20 years or more".

The more I learn about PRP from the PRP Community, the more I come to believe that the predictors of duration (THEY) base their predictions on one London-based dermatologist who looked back on HIS 35 years of experience in 2006.

Sorry, Tamara — just some PRP venting. I am frustrated by the lack of research on the part of dermatologists regarding the duration of PRP. You know how that goes.

Who is treating you? How many PRP patients has your dermatologist treated? What medications are you using — or have tried.

Check out : http://prpalliance.com/2016/05/09/understa...

Thanks for journey the PRP Community on RareConnect. When we share, we learn.

christinegnther
moderator

Als vor 3 Jahren bei unserer Tochter PRP ausbrach wurde uns gesagt, dass sie wahrscheinlich Typ lll ist. Das würde bedeuten, das ihre PRP nach ca. einem Jahr in Remission gehen sollte. Im August beginnt unser viertes Jahr mit PRP - sieht ganz danach aus, als träfe die Typisieren nicht immer zu oder dass es noch viel mehr PRP Typen gibt als bisher angenommen.
Wenn ich Erfahrungsberichte von anderen PRP Betroffen lese stelle ich immer wieder fest, wie einzigartig und individuell die jeweilige PRP Form jedes Einzelnen ist.
PRP ist das Einhorn unter den Hauterkrankungen - so selten, dass es kaum ein Dermatologe zu Gesicht bekommt. Meine Tochter liebt Einhörner und liebt es wenn ich ihr ihre Hauterkrankung mit Hilfe des Einhornes erkläre.

Bill is right. There are different "types". I don't think that it will go away - there is no cure for PRP. Some may have remission or off time. But possibilities of flare ups will always be present. My best advice is to not worry or stress out. Stress alone can trigger it to be much worse. So relax and try to seek out things that help soothe the symptoms to make them more tolerable and let the PRP run it's course and hope it will clear up on it's own.