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)

7 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

  5. Doctor wanting to put me on Humira.

    Good morning group.
    I am a retired Prpr. Its been seventeen yrs, but its back with a fury,
    I have a question , that I hope somebody, can answer.
    My Derm wants to put me on HUMIRIA, to try and cure. me. Has anyone out there ever go that Route?
    If so what were your experiences,and your results. All the research on this drug, is not good . It has a lot of Nasty side ie, Cancer, Liver failure etc..My internest and Endo said to give it a try, with the injections, but I am really worried about the side effects. HELP , VIC IN ST. LOUIS. – victory490@aol.com

  6. My name is James. I’m 64 years old.
    I am in the early months of PRP. First noticed a red circular rash on
    top of my left foot in Nov 2017. After a few weeks it started to grow and looked like ringworm. Went to urgent care, diagnosed as ringworm, anti-fungal ointment prescribed.
    Rash next appeared behind both knees and then covered about 50% of the front of legs below knee. Went to GP MD, he also saw ringworm and started me on a series of meds for fungal infections.
    By mid-Jan 2018, spread to the top side of arms shoulders and chest. Referred to Dermatologist in Feb 2018. Took biopsy with inclusive results, but thinks it is PRP. Prescribed Vectical ointment (calcitriol) for 30 days. Awaiting 30 day follow-up visit.
    No signs of PRP on soles of feet or palms

    Question for the community:
    My case is not following the majority of PRP testimonials. Mine started with a herald spot on my left foot, then appeared on my legs, then my arms, chest and shoulders. There may be some slight evidence on my face, but my face has been red with slight discolorations for 3 to 5 years. I have very few small spots on my stomach and left side, none on my back.
    Over the past week, my upper body has seen no new spots and much of the inflammation of the thick plaques has subsided though the plaques are still evident; however, my legs and the top of my feet are inflamed, itchy and still see a few new small spots.
    Many of the testimonials I have read indicate cases much worse than mine. Should I hope for a mild case?
    Questions:
    1) Are there others in the community that first experienced spot on top of feet or legs with a slow progression on to the upper body?
    2) Are there those that experienced PRP over about 30% of the body and never progress further?
    3) I am only 4 to 5 months into PRP, should I brace myself for the advent of another more aggressive outbreak over the entire body?

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