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

Treatment Plan

Hi, we live in Ireland my 17 1/2 year old daughter was diagnosed with PRP 6 weeks ago, confirmed with biopsy but due to age cannot decide type.
Healthy prior to this. Currently on metotrexate 15mgs initially 10mgs weekly.
Our dermatologist will not prescribe Isotretinoin due to age.
Would be interested to hear of any similar stories and treatments.
Regards Ann

BillMcCue
moderator

Hi, I maintain a PRP patient registry.

As rare as PRP is (one in 400,000) and an estimated 11 “active” PRP patients in Ireland, I have identified there are 6 PRP patients in Ireland:
Dublin (2)
Mayo
New Ross
Galway
Clarinbridge.
Where do you and your daughter live?

I have also identified 16 PRP patients who were diagnosed between 16 and 18 years of age:
Cuba
India (2)
Thailand
USA (5)
England (2)
Netherlands
Canada
Greece (2)
I would advise you to join the PRP Facebook Support Group and post the same message you have posted on RareConnect. GO TO: https://www.facebook.com/groups/15865278115

Also go back to your RareConnect profile and activate your email for MEMBERS.

Welcome to the PRP Community. You and your daughter are not alone.

— Bill McCue

christinegnther
moderator

Hi and welcome!
Our daughter is nearly 8 and lives since 4 years with PRP.
Like Bill already suggest joining the PRP Facebook Support Group could be a great opportunity for you and your daughter to get in touch with other PRPers of your daughters age as well as with grown up PRPers whose PRP started at her age.

Maybe you have also already read through the profile stories and testimonials of the member here in this group. I am sure you will find some interesting stories here too which help you to understand PRP and living with PRP better.

Big hug to you and your daughter!