In the Queue — Endgame (Remission)

FROM THE EDITOR

The Lion’s Share of information presented in PRP 101 comes from Land of Chat posts and comments. The purpose of “In the Queue” is to provide a staging area for the collection and processing of PRP patient and caregiver sights and observations. The post(s) listed below are “In the Queue” for content development under the category of ENDGAME (REMISSION)

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Teresa W: Kingsport, Tennessee, August 30, 2017 (33 comments)

Question to anyone in complete remission….How long did it take you to go into complete remission of prp? Members Only Link

Lisa L – Atlanta, Georgia, April 3, 2020: (14 comments)

I’m almost afraid to ask this question but is there anyone who has cleared the disease and has not had a recurrence? Long term remission? If I can ever get past this I feel like I’ll live in fear of it… Members Only Link

Bill M – Plano, Texas; June 25, 2015; (22 comments)

Once I was declared in remission (April 8, 2014), I quickly realized that remission wasn’t the end of the journey at all. I still had lingering issues (energy, loss of muscle mass, sore feet and anxiety when any “spot” appears. I modified the tagline to read: On the Road…the Journey from Onset THROUGH Remission. Members Only Link

Kim R– Charleston, West Virginia; August 14, 2018 (38 comments)

To the best of your knowledge, what is the shortest time one had to suffer before they went into remission? Members Only Link

Tierney R – Created a poll; July 18, 2017. (77 comments)

Created a poll that solicited information about remission status. . Members Only Link

Leslie L –Colorado Soprings,m Colorado; August 24, 2018n ( 15 comments)

Hoping to get a few answers to my question regarding remission and starting over with this dreaded disease. PLEASE help me to understand this!!! Members Only Link

Louis L – Montreal, Quebec, Canada; April 13, 2017 (25 comments) Hi everybody! I am in total remission of the pityriasis rubra pilairis for 2 months now but every time I do some sport, I have red plates which stand out again on my body. According to you, is it normal? Or does this mean I have still the disease? thanks! Members Only Link

Courtney W – Scarsdale, New York: April 29, 2016 (29 comments)

Hi All! For those of you that were/are a caretaker of someone with PRP or have PRP yourself & have actually gone into remission, what are the actual signs of remission? There seems to be very little literature on ‘signs of remission’. If the color of the rash is less angry, is that a sign that remission is coming or just a part of the active phase? Does the rash literally just start disappearing, causing more areas of sparing? Any insight anyone can provide on what the notable changes of the rash are that signifies remission would be greatly appreciated. Thanks! Members Only Link

Roberta K – Sicklerville, New Jersey; September 25, 2017 (35 comments) Just wondering for those in remission – have you been able to wean off meds and creams or does it continue? Members Only Link

Anita P –Fultonham, Ohio; January 3, 2020; (24 comments) In response to another post plus a question that’s been on my mind lately. My Derm told me most of his Adult onset patients only had it for 3 years. But to know how long it lasts is different for everyone. The medicine you take only makes you comfortable and controls the shedding. It’s not a cure. And I’m not sure if it’s one day you no longer have any of the symptoms then you’re in remission. If you’re taking the medicine how do you know if you’re in remission? Members Only Link

Mark N –Galesburg, Michigan; June 29, 2015, (28 comments) A question for people with Adult Classic PRP who have been through the fully cycle of the disease and are now “in remission”. First of all, the word “remission” suggests in my mind that this disease has the possibility of coming back. My Dermatologist insists that this will not come back once it is done, AND that there will be no residual effects of the disease. If you would be so kind, please comment based on your own personal experience. Please understand, I am not looking for what anyone has heard, or what they know second hand. Thank you. Members Only Link

Aimee D – Poole, England; August 12, 2015; (16 comments)

Can I please just ask what it means to you fellow prp’rs to be in remission from your disease? And is your opinion of being in remission or discharged from your health care professional the same as your dermatologist? Thank you. Members Only Link