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Pityriasis Rubra Pilaris

What is Pityriasis Rubra Pilaris?

Pityriasis Rubra Pilaris is a group of rare skin disorders characterized by reddish orange patches on the skin and severe flaking.

 

Pityriasis Rubra Pilaris is a group of rare skin disorders characterized by reddish orange patches on the skin and severe flaking.
Acknowledgement of Pityriasis Rubra Pilaris has not been added yet.
Prevalence Information of Pityriasis Rubra Pilaris has not been added yet.
Synonyms for Pityriasis Rubra Pilaris has not been added yet.
No causes for this condition are known.
Symptoms for Pityriasis Rubra Pilaris has not been added yet.
Diagnosis of Pityriasis Rubra Pilaris has not been added yet.
Diagnostic tests of Pityriasis Rubra Pilaris has not been added yet
Treatments of Pityriasis Rubra Pilaris has not been added yet.
Prognosis of Pityriasis Rubra Pilaris has not been added yet.
Tips or Suggestions of Pityriasis Rubra Pilaris has not been added yet.
References of Pityriasis Rubra Pilaris has not been added yet.
PRP skin condition Created by Perry
Last updated 11 Sep 2014, 10:15 PM

Posted by judy31763
11 Sep 2014, 10:15 PM

hi, I WAS USING CREAMS AND OITMENTS, WORKED OK BUT HAD SUCH LARGE AREAS TO COVER DRS THOUGHT I MIGHT BE GETTING TOO MUCH STEROIDS IN MY SYSTEM I AM NO LONGER ON THEM MY DRS HAVE ME ON HUMERA I INJECT IT TWICE A MONTH, BEEN ON IT FOR 2 MONTHS SOME CHANGE WILL LET YALL KNOW IF THERE ARE ANYMORE CHANGES IN THE NEXT COUPLE OF MONTHS DO YALL HAVE SKIN THAT YOU CAN ACTUALLY GET SAND LIKE PARTICLES TO COME OFF THE AFFECTED AREAS??? ITS SCARY!!!!! HOPE YALL ARE BETTER---

Posted by Kiavel
31 Oct 2013, 01:44 PM

I have had the disease since i was about three years old, it has dominated my teenage and adult life becoming much more severe as i have aged. I am desperate to find a cure, some people find methotrexate or asecretin works well for them but i personally have had horrible experiences with these drugs methotrexate particularly. Sunshine works well for me but living in Britain means that recovery in the summer is minimal and artificial light seems rather ineffective in comparison. I believe I am quite possibly the most covered of all people with this disease as i am yet to see anyone with such a large body coverage. (face, neck, stomach, back, arms, legs) i would say over 60 percent of my body is covered, any help or advice would be greatly appreciated and best of luck to those of you suffering from this painful debilitating disease. Never let it get the best of you, the depression and anxiety i have experienced over the past 5 years i would not wish on anyone, never underestimate the help and support family and friends provide, my struggle is far from over but it is good to know i am not alone and hope that one day i can help others deal with this and similar conditions

Posted by judy31763
5 Apr 2013, 11:44 PM

hi, have you tired anything that has helped??? I am waiting for my results but dr seems I have this and it is unreal----I hope we both can get help through someone that has had this for awhile-----

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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Diagnosed with PRP a week ago.
I just saw a new dermatologist today and after 32 yrs of peeling skin, red and crusty all over she said it looks like prp----thought it would be something easy to fix but waiting for results of...
I have a condition called pityriasis rubra pilaris . I hope to contact other sufferers.
I am 64 years old and live in Essex.

 

I was diagnosed with PRP in April 2008 after 2/3 months of skin appointments. It completely changed our lives and I was forced to give up work. All of my...

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PRP skin condition

Created by Perry | Last updated 11 Sep 2014, 10:15 PM


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