Thank You For Being Counted


I have been collecting PRP-related information from PRP patients and their caregivers since November, 2013. In the beginning it could take six requests before I received a completed PRP census form.

On the 1st and 15th of ever month the NUMBERS will be posted here.  The list will show the November 1, 2017 numbers and the most current numbers.

The numbers below are based on the “core data” shared by PRP patients and caregivers worldwide. The PRP Community Database is the most complete representation of our patient population. Thank you for sharing your information.

Bill McCue, Founder/President
PRP Alliance, Inc.


Recap as of November 1, 2017

Numbers in parentheses ( ) indicate “not providing data”

✽  Total number of PRP patients reporting:   1,629

✽  Reporting email addresses:   1,033 (596)

✽  Reporting location:   1,140 (489)

✽  Reporting onset date:  715 (914)

✽  Reporting onset age:  651 (978)

✽  Reporting diagnosis date: 694 (935)

✽  Reporting current status: 656 (973)

✽  Active:  394

✽  Remission: 262

✽  Remission date: 64 (198)

✽  Reporting standard drug therapies: 67 (1,562)

5 Replies to “Thank You For Being Counted”

  1. The onset of my PRP was April 2011, but I was not Diagnosed until October 2011. I was active until January 2014 when I went into remission. I got it back again December 2014 and had it until September2017, hopefully I am in remission now.

  2. The PRP Survival guide has been really valuable; the newsletter the FB group too. Thank you to all involved.

  3. I am delighted that I feel so much better with stelara every 6 weeks. I am so happy to have my energy back and am so grateful for all the information and help on PRP Facebook.
    Thanks everyone

  4. Thank you for being part of the PRP Facebook community. It was great for to have met others and to read their stories, experiences, motivation, concerns. Take care all and all the best. Kerstin

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