Pityriasis Rubra Pilaris (PRP) Community

Learn how others live with Pityriasis Rubra Pilaris (PRP) and share your story

PRP

by massimofranco published 9 days ago

A quick summary of the treatments made From November 28 to December 21:
2 IV / day of Urbason 40mg
Legalon 140 cpr 2 / day
Omeprazole 20mg 1 / day

From December 22 to January 14:
IV Urbason 40mg in the morning
IV urbason 20 mg in the evening
Pravone and omeprazole as above

From January 15 to March 7:
Deltacortene 25 mg in the morning and half at 15 o'clock
Neotigason 25mg cps...

Tierney L. Ratti

by tierneylynchratti published 26 days ago

The first letter was written in 1994 to five PRP patients, the only ones I knew about. Today, I am the administrator of the PRP Facebook Support Group with a membership of 916 and growing. The second letter was a follow up to the first. FROM: Tierney L. Ratti — Virginia Beach, VA 23454

TO: John P. Reid. James Hartfield, Charles R. McAllaster, Anthony Pack and John L. Cullen

DATE: 30 Nove...

Still learning about PRP

by joanpendergast published 2 months ago

Luckier than others it seems. Not so much itching and flaking. My hair dresser first noticed changes in my scalp. Red like rash all over. Went to dermatologist. Triamcinolone Crm and light treatments. No change. Primary dr thought I might have Laser Trelat which indicates a cancer. Had chest X-ray, mammogram, bone marrow, colonoscopy, endoscopy and many biopsies.
Grand Round with 70 doctors ...

PRIVACY POLICY

by christinegnther published 3 months ago

PRIVACY POLICY

Dear members of the PRP Community on RareConnect

Bill McCue and I are very excited about welcoming many new members in our Community and are glad that many of you have found the time and effort to write profile stories, testimonials, ask questions,help with answers and share experiences. Thanks for your support.

Please make sure that you are aware of the privacy policy ...

My PRP History

by DBrazil published 3 months ago

My journey with PRP My PRP History
• June 2016 – Started seeing spots on abdomen
• July 2016 – Spots not going away and additional spots on my back, neck, upper legs and upper arms.
• July 2016 – Went to my GP’s office, saw a PA, was afraid it was bed bugs. They diagnosed it as a heat rash as we were having a heat wave. I knew it was not as I had lived here most of my life and had never had ...

Newly diagnosed

Newly diagnosed

by irmagooley published 3 months ago

Adult Onset PRP I started symptoms 2 years ago and my doctor misdiagnosed me. Finally I said enough is enough and I found a new dermatologist. She diagnosed me with Adult unset PRP after 3 visits. Ive been on med for 6weeks and seeing a slight improvement. I have so many questions about how others are dealing with this awful condition.

PRP baby 14 month old

PRP baby 14 month old

by melissachance published 4 months ago

My baby's got what?! Hello!

Back when Saylor was 6/7 weeks she started with a small rash on both shoulders. We put this down to the rubbing of clothing. After a while, I spoke to a GP who said it was nothing to worry about and that when summer came (she was a winter baby) take her clothes off and the patches would disappear. Needless to say that's never happened!

We have spen...

Life of a PRP carer

by taniagray published 5 months ago

How life has affected all those that love a PRP patient. I hear to often the words "you dont have the disease therefore you dont understand" those words are true, however it does affect the carer in other ways, all are just as important.

So our story...in 2012 my partner Jules was diagnosed with Fuchs Dystrophy, an eye condition which leads to impaired vision, my role as a carer ...