Pityriasis Rubra Pilaris (PRP) Community

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PRP e acitretina

Ho 57 anni e da circa 1 mese mi è stata diagnosticata la pitiriasi rubra pilaris che sto trattando con acitretina (35 mg al giorno). Qualcuno ha esperienza riguardo all'efficacia di questo trattamento? Dopo quanto tempo si riesce a far scomparire i sintomi?

After the May 17 control visit, I lowered acitretine to 25 mg daily to reduce itching and pruritus. Today, on June 5th, I contacted the doctor because all the initial symptoms of the disease reappeared, that is, extensive redness, hand and foot pain, and eye pain. New hospitalization in Rome for next Saturday and in the meantime bring the dose of acitretine to 35 mg per day. But with acitretine, symptoms should not disappear completely?

After the May 17 control visit, I lowered acitretine to 25 mg daily to reduce itching and pruritus. Today, on June 5th, I contacted the doctor because all the initial symptoms of the disease reappeared, that is, extensive redness, hand and foot pain, and eye pain. New hospitalization in Rome for next Saturday and in the meantime bring the dose of acitretine to 35 mg per day. But with acitretine, symptoms should not disappear completely?

christinegnther
moderator

Hi, Acitretin worked good for Molly for a while - but she was NEVER completely PRP free!

BillMcCue
moderator

PRP Research Announcement

Nicholas Ross MD (Sidney Kimmel Medical College at Thomas Jefferson University, Department of Dermatology and Cutaneous Biology) has asked me to “rally the troops” in support of PRP research regarding Stelara® (ustekinumab). This announcement will be shared with the PRP Facebook Support Group, PRP Community on RareConnect and the 574 "unaligned" PRP patients with email addresses.

The PURPOSE of this specific research effort is to study the efficacy of Stelara as a treatment option for pityriasis rubra pilaris.

PARTICIPANTS

(1) PRP patients currently taking Stelara
(2) PRP patients who have taken Stelara in the past

EXPERIENCE

What was the experience of each PRP patient’s with Stelara…
(1) Stelara was effective
(2) Stelara was NOT effective
(3) Too soon to tell

RESTRICTIONS

(1) No geographic restrictions — participants can live ANYWHERE on planet earth.
(2) No age restrictions — Adult Onset or Juvenile Onset

PATH FORWARD

(1) Confirm your interest here or via email (papa.bill@mac.com) and I will add you to the list.
(2) Download a copy of the Patient Study Packet 11.7.16-10.5.17. Follow the instructions. Let me know if you have already sent a completed Patient Study Packet to Dr. Ross and I will confirm that you are in the study group.

The PDF will be added to LEARN >>> DOCUMENTS

QUESTIONS

Ask any questions as a REPLY to this post so the answers can be shared with everyone.

martacampabadal
moderator

Hi Bill,

The document has been added to the Learn Section > Documents. Here's the download link:
https://www.rareconnect.org/en/community/p...

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!

BillMcCue
moderator

AAD Video Released

We all know that PRP is a rare disease. There are over 7,000 rare diseases and over 1,000 rare SKIN disorders. We fight to tell our story. And then the American Academy of Dermatology produces an advertisement for social media. Cutaneous lymphoma. Hypohidrotic ectodermal dysplasia, Pemphigus vulgaris. PITYRIASIS RUBRA PILARIS.

And who are our stars? Ginny Maxwell and her family of PRP advocates. Click the link.

https://twitter.com/AADskin/status/8475477...

BillMcCue
moderator

A Better Mousetrap

A BETTER MOUSETRAP

The server bank that has hosted the PRP Alliance website since October 2014, imploded unexpectedly in mid-January, 2017. For the past two months all efforts to reconstitute the PRP Survival Guide have failed. Bottomline: Nearly 500 articles and 300 associated images have been vaporized.

I am turning this disaster into an opportunity to build a better mousetrap.

Towards this end I invite members of the PRP Facebook and RareConnect communities to read the current list of BASIC questions a Newbie might ask. What does a newly diagnosed adult patient or the parent of a newly disgnosed child want or need to know in the first 48 hours?

Nearly 41 years ago a newborn screening blood test confirmed that my newborn daughter had an "inborn error" called phenylketonuria or PKU, a rare metabolic disorder. Her mother and I were immediately summoned to the Emergency Room where we met a team of healthcare professionals that included a geneticist, social worker, Registered Nurse, pediatrician and a mental health profession (for the parents). There was NO learning curve. We received a crash course in PKU and were connected with the PKU Network (parents and kids). Awareness was an essential part of Marisa's treatment plan.

Fast forward to 2017 and PRP. From the shared experiences and insights of the PRP community, we know that a newbie — adult or child — is typically set adrift by healthcare professionals with little or no information about the future challenges that PRP patients and caregivers will face.

I am NOT soliciting ANSWERS too these questions. I just want some feedback to better understand the QUESTIONS a newbie — patient or caregiver — SHOULD ASK in the first 24 hours.

Part 1 — PRP BASICS

1. What is pityriasis rubra pilaris (PRP)?
2. What are the causes of PRP?
3. How rare is PRP?
4. What are the variations (types) of PRP?
5. What is the long-term outlook for adults and children with PRP?
6. How is PRP diagnosed?
7. What are the most common onset symptoms of PRP and how do they progress?
8. What are the stages/phases of PRP, e.g., onset through remission/management?
9. What are the basic treatment options for PRP?
10. What are the challenges of living with PRP?
11. How bad is this going to get?
12. How do patients and their caregivers survive PRP?
13. What is the status of PRP Research?

Thanks in advance for any suggestions you post as

COMMENTS.

BillMcCue
moderator

How rare is juvenile onset PRP?

A member of the PRP Facebook Support Group asked about the rarity of juvenile onset PRP. My math may be flawed, but consider the following:

(1) Overal incidence rate for "active" PRP: one in 400,000

(2) That equates to 2.5 "active" PRP patients in 1 million

(3) For adult onset (55%): one in 1,375,000

(4) For juvenile onset (45%): 1 in 1,125,000

Based on a US population of 324,493.740 (World Clock), the current "active" PRP population should be: 811 of which 446 would be adult onset and 365.

Bottom line: We are rare, but much more prevalent than unicorns.

christinegnther
moderator

Bill, thanks a lot!

Tihana
moderator

PRP COMMUNITY MAP

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.

https://www.rareconnect.org/en/community/p...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!