How to Use the PRP Survival Guide

From the Editor

I was diagnosed with pityriasis rubra pilaris (PRP) on November 28, 2012 — nearly three months after a red spot appeared on my forehead.

Someone from my dermatologist’s office called me to confirm the diagnosis and to schedule an appointment for the following day. All she shared with me was the proper spelling of pityriasis rubra pilaris.

That evening I performed a series of internet searches and devoured  two dozen healthcare-related websites. Unfortunately, the information I uncovered was limited in scope and redundant in content. Even more disconcerting, however, was the presumption that I was familiar with medical terms. Arrgh!

Sometime during the early morning hours of November 29, as I became overwhelmed by my ignorance, I knew I needed to find a PRP Survival Guide.

When I discovered that there wasn’t one, I started writing it. Three years ago — May 20, 2015 — the PRP Survival Guide was officially introduced to the worldwide PRP community.


SEARCHING THE INTERNET

The PRP Survival Guide is offered as an alternative to unstructured and random forays using Dr. Google and Dr. Yahoo. All too often these efforts lead to redundancy, frustration and even misinformation. If we do are job properly, you will either (1) find the answers you seek or (2) find other options. Learn more about using Dr. Google.

SEARCHING THE PRP SURVIVAL GUIDE

Please use the SEARCH field to locate posts, PDFs and other links. questions, chapters and topics.  The most effective way to access a specific Chapter Index is to use the Table of Contents link below.

TRANSLATE FEATURE

Every page in the PRP Survival Guide has a TRANSLATE button powered by Google Translate. The pull-down menu offers 100 language options. The translation applies to the post/page as well as any replies that follow.


The PRP Survival Guide is divided into five sections:        

THE BASICS

We begin PRP 101 with the basics. Whether you are a newly diagnosed patient or supportive caregiver (spouse, partner, parent, family or friend), or a more “seasoned traveler”,  the questions we hear most often fall conveniently into two categories:

✽   Questions with answers you WANT to know

✽   Questions with answers you NEED to know       

TREATING PRP

Treating PRP focuses on treatment options (prescription drugs and topicals) as well as managing our expectations. We all learn early in our PRP journeys that the efficacy of treatment is a roll of the dice. We also learn that not all dermatologists are created equal. Not all dermatologists are PRP savvy. We want patients and caregivers to have a basic understanding of the options and confident in your ability to ask your dermatologist important questions.

DAILY LIFE

Every aspect of the PRP experience … coping with the 24/7 challenges to body, mind and spirit. Feedback by hundreds of fellow travelers who have shared their insights based on their unique journeys with posts and comments from members of the PRP Facebook Support Group.                

 THE ENDGAME

For most PRP patients and caregivers, the outcome we seek is remission. The definition of remission can include “symptom-free with meds”, “remission with remnants”, and the least technical variation: “I finally have my life back”. For others, the PRP journey is defined by long-term management of symptoms rather than remission. 

IN THE QUEUE

Every week there are GREAT posts and equally GREAT comments shared by members of the PRP Facebook Support Group on a broad spectrum of topics. INTHE QUEUE is an effort to identify posts from the Land of Chat (PRP Facebook Support Group) that are worthy of special attention and retention.

DISCLAIMER

The PRP Survival Guide is designed for educational purposes only and not for the purpose of rendering medical advice. It is not the intention of the PRP Survival Guide to provide specific medical advice, but rather to provide users with information to better understand and manage the burden of pityriasis rubra pilaris on body, mind and spirit. No individual should indulge in self-diagnosis or embark upon any course of medical treatment that is described in the PRP Survival Guide without first consulting a health care professional.


NOTES — VACUUM

 

 

   · **RE: VACUUM CLEANERS** When it comes to managing expectations, every PRP patient and his or her family — eventually realizes that the flaking skin cascading daily from our bodies will eventually fall victim to gravity and end up on a floor. Over the years I have heard tales of woe that describe how vacuum cleaners purchased pre-onset have succumbed to the rigors of “skin drifts”. Some vacuums died a heroes death; others just whimpered. And then there are PRP families who have treated their vacuum cleaner as a valued member of the family. These “flake sucking giants” often earned nicknames of endearment and strength, e.g., “The Beast”. And don’t forget those handheld portables. I recall a PRP family that lived in a two-story house and kept a second handheld vacuum upstairs. Another “PRP traveler” kept one within arm’s reach of his recliner. We also know that the mantra for medications applies to vacuum cleaners as well. * Which manufacturers/models worked? * Which models/manufacturers failed. Please take a few moments to share your vacuum stories HERE as a comment for inclusion in the PRP Survivl Guide. http://prpsurvivalguide.org/2020/10/26/what-is-the-best-prp-vacuum-cleaner/

13Carol Lewis, Teri Rosalez and 11 others
22 Comments
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Back then I had my Rainbow vacuum and boy did it get used. Every morning my husband would vacuum every piece of skin off the bed. Could not change sheets everyday so vacuum it was. And when I quit shedding I moved all furniture in the house and boy …

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Feb 5  ·

Pityriasis Rubra...

  · …the PRP Glossary on the subject of vacuum clearers, e.g., Dyson, Meile, Romba, Hoover, DustBuster, etc., I looked up images and stumbled upon a vacuum cleaner that made me chuckle. Consider this “just for fun”. INTRODUCING the PRP 2020@ — a revolutionary, 100% electric vacuum cleaner helping to keep the homes of PRP patients free of shedding skin. Every day, PRP patients shed up to two cups of skin. This eco-friendly and ergonomic vacuum cleaner provides a new weapon and peace of mind for PRP patients and caregivers. The PRP 2020® is compact enough to fit into the tightest corners and recesses, picking up everything in its path, including discarded nitrile gloves and empty containers of topical ointments and creams. FEATURES Up to 16 hours of battery life. Compact, maneuverable and self-propelled to climb stairs and handle uneven terrain, e.g., pets. High suction power. Can reliably suck a bowling ball out of a closed closet. Variety of attachments for vacuuming sheets, clothes, furniture, carpets and Old English Sheepdogs. Standard 54 gallon (240 liter container) will hold 500-1,000 days of skin debris. Built-in counter showing hours of operation and remaining charge. Can also be programmed to provide alerts for upcoming clinic visits. The suction system has an anti-clogging grid to prevent blockages caused by nitrile gloves, plastic bags, discarded slippers and empty tubs of topical ointments and creams. SERIOUSLY — Do you have a vacuum cleaner story to share? It seems to me that some PRP patients and their caregivers have actually given their vacuum cleaner names. I remember a PRP patient who lived in a two story house and had four Dustbusters “at the ready”, two on each floor.

Dec 30, 2016  ·

Pityriasis Rubra...

  · Robot Vacuum Cleaners — A fellow PRP patient from Down Under (not a Facebooker) has a question in need of an answer. He asks: “Do any of you, particularly if you are in the heavy shedding stage, have any experience with robot vacuum cleaners? If so, what models? Your collective responses will be forwarded to him via email. Perhaps he will appreciate the value of joining the PRP Facebook Community. One can nobly hope.

I’ve spent a Rumba robot for over 5 years and it takes most of the scales. However, not them flying into corners. I use it 2-3 times a week + a real vacuum. But you have to limit the Rumba for smaller areas if it runs everywhere at once, it is not very…


Oct 16, 2018  ·

Pityriasis Rubra...

  · A few questions: 1. How often do you vacuum? 2. How often do you apply lotion? 3. I will be throwing away these old clothes I keep wearing because of all the lotions they absorb- does anyone else do this?

3Susan Rausch and 2 others
14 Comments
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Also, when I was in the shredding staqe , vacuum working overtime , constant cleaning of the filters, when my brooms were in need of replacement because of over use, our vacuum konked out! Talk about an emergency! I explained my dilemma to the group an…


Feb 9, 2019  ·

  · Saturday and Sunday is my time to read posts, comments and replies and update the PRP Survival Guide. Since the websites for PRP Alliance and the PRP Survival Guide are down, I have had “a sudden change of plans”. Let’s chat about SUPPORT. What do we get? What do we give? I will take the comments and construct an article for the PRP Survival Guide. It will be offered to NEW MEMBERS as an overview to help set reasonable expectations. Consider this a TWO-DAY PUBLIC FORUM. For those who are “active participants” with posts, comments and replies — Why do you share your personal PRP-related insights and experiences? What has the PRP Facebook Support Group meant to you? But the QUESTIONS in need of an ANSWERS is this: What can the Land of Chat do better. What can the PRP Survival Guide do better? What can I do better? This is not a effort to fish for complements. Rather, the focus is on building a better mousetrap.


 

I used to change in the bathtub, then started to worry about the plumbing! We have a septic system out here in the wilds of NJ. I will now fear for my vacuum cleaner!


 
 

Jan 2, 2017  ·

  · Anyone have a vacuum they would recommend? One that is really good at getting all the flakeys?

I use a dyson and a shop vac , its insanely ridiculous how much skin we loose in a day( I used to keep track .. an ice cream bucket a day !! …I stopped because it was depressing to see every day ) .. I sweep and vacuum and wash my floors before I go …

May 17, 2016  ·

Pityriasis Rubra...

  · just reminded of the keep up of house…..quite the task when hands hurt too bad to use vacuum/broom/mop etc. ….cute litl skin trail following ur evey move…..question do you work , at a job ? have careers? I cant see that happening for me….but I was on stress leave 3 1/2 yrs when this started. thx

 s

Jan 13, 2017  ·

Pityriasis Rubra...

  · …before the invention of electricity and vacuum cleaners? Here’s a photo of my Miele that hasn’t been put away in over six months now. What I’d do without it I don’t know.


Martin Wedge

, my vacuum is the same as yours, but white. And yes, it’s doing double duty, daily. If I could get frequent flyer miles for the amount I’ve pushed that vacuum I could take the entire group on an around the world tour!


Jan 26, 2016  ·

Pityriasis Rubra...

  · …just collects on. We do have to vacuum and wash his sheets daily, but would anyone have an idea of a blanket or comforter material that would not attract all that skin? As for the dark wood floors, I found that Swiffer Sweeper dry cloths work wonders in between vacuuming.


22
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sew two sheets together and put the comforter inside and you can wash it daily with his regular sheets. That way the skin cells don’t stick to the comforter. When Bill was at his worst, I ran the vacuum all day long every day And washed the sheets da…

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 · 4y

Jan 3, 2017  ·

Pityriasis Rubra...

  · There was a post earlier about vacuum cleaners and skin flakes but I can’t find it now. But I wanted to say that when it comes to getting skin flakes off clothes , slippers etc my wife bought some microfibre material and it really works well to use it to rub off dead skin. What do others use ??

4 Comments

Jan 13, 2017  ·

Pityriasis Rubra...

  · So grateful for my kids and husband. My daughter is cleaning my house right now with my rainbow vacuum. The shedding of skin is just disgusting. I try to use the little sweeper but it just doesn’t get it up. I do not have the energy to clean, and I’m OCD, but no longer. More worried about getting better.

10Murray Rose and 9 others

Oct 21, 2014  ·

Pityriasis Rubra...

  · …area clean – I bought a heavy duty vacuum and cleaned up the dead skin every day from the bathroom floor and heavy traffic areas. I have hardwood floors in the kitchen and I hated seeing dead skin all over the place. I also made sure I left the house if possible and tried to keep walking as much as possible. I am now part of the “breakfast club” at our local greasy spoon restaurant for example. Granted, some days I didnt get out and didnt always walk, but I always gave myself the permission NOT to as well. 4) REST – it is so important. If you are not sleeping, it is OK to take sleeping pills as prescribed by your doctor. Give yourself permission to take as many naps as you want and DONT feel bad about it. If you feel good and you want to work around the house – then do it. If you dont feel like it, then DONT do it – and dont feel bad about it. One last comment: On my last doctors visit on October 7, I asked him what was mostly responsible for my improvement – the Acitretin, or general healing of the PRP – he said BOTH. Keep fighting the good fight – I hope this was an encouragement in some way for anyone.


Dec 11, 2017  ·

Pityriasis Rubra...

  · …needles scattered in with the flakes–poor vacuum cleaner. But I love my lovely Christmas tree!


13Murray Rose, Bronagh Brigid Sas-kropiwnicki and 11 others

Jul 25, 2015  ·

Pityriasis Rubra...

  · …life? I know it has certainly changed mine!! (And the vacuum cleaners). Lol

7Eileen Schukis and 6 others
14 Comments

Sep 8, 2017  ·

Pityriasis Rubra...

  · Sweep, vacuum, sweep, vacuum, repeat! When does it end. I feel like NEVER!!

11Murray Rose, Anita Storment Ray and 9 others
3 Comments

Dec 20, 2015  ·

Pityriasis Rubra...

  · …around the house but when he has to vacuum up his cells or make a bed he has to rest for a few hours. He doesn’t sweat so I know that is a problem and I know the skin shedding is taking a toll on his bodily organs but he refuses to go to see anyone unless the derm demands it and last visit all blood work was fine and supposedly all systems were okay. Just wondering if anyone else suffers from this type of fatigue.

3Carol Lewis and 2 others
34 Comments
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Hi Glen Misek: so know what you are speaking of as I have MS and yes good nutrition and exercise (what you can do without overtaxing) is SO important. I have him on D supplements as I take the same so why not him. I am cooking twice as much protein …

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 · 4y

Nov 20, 2016  ·

Pityriasis Rubra...

  · I would love to know what lotions and potions you all are using to combat PRP and the results. I am currently using: 1. Face: I am cleansing with Burt’s Bee’s Sensitive Facial Cleanser, and Cetaphil Moisturizer for Face. 2. For red scaly lesions: Cleaning with Cetaphil Gentle Skin Cleanser and Cetaphil Eczema Calming Body Moisturizer. 3. Scalp: using Ketoconazole 2% Shampoo 120ml every other day 4. Red, cracking, dry Hands & Feet: Constantly adding Aquaphor and wearing Spa gloves and white loose cotton socks. 5. Eyes: using rewetting saline every morning 6. Ears: Very dry and itchy. Is anyone using an at home ear vacuum? Results: just maintaining some relief. In my 3rd month and no getting rid of this in sight. Taking Methotrexate 2.5mg six tablets once a week.

11
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Sounds similar to what I do. I haven’t gotten a home vacuum for my ears but I am anxious to look into it. Hang in there.

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 · 3y

Nov 6, 2014  ·

Pityriasis Rubra...

  · …around with broom and sometimes the vacuum yet she never complains. Sometimes she can be my sweet tomato and as I always say to her learnt from you great people PRETTY RED PERSON……

23You, Christine Günther, Ginny Maxwell and 20 others
3 Comments

Jan 6, 2017  ·

Pityriasis Rubra...

  · …PRP. We should have shares in the vacuum cleaner business. I hate all this skin constantly coming off me.

10Eileen Schukis and 9 others
16 Comments

Yesterday  ·

Pityriasis Rubra...

  · My husband, Terry Hollis has just started his journey with PRP. We have a few questions. 1. Should we be applying the the Triamcinolome Acetonide cream twice a day or just as his discomfort requires? 2. He has a lot of skin accumulating in his ears, is there a recommended way to keep this out? 3. He started on Soriatane about 4 days ago and he is having dry eyes. Is there a prescription eye drop that will work better than the over the counter drops? 4. What’s the general opinion among the group, is the risk of all the side effects worth taking the Soriatane? If you can handle the skin issues, will this drug actually make time frame shorter dealing with it? We have been a little confused, we know it doesn’t eradicate PRP, just not clear about the time part. Thanks for any information you can share.

33
22 Comments
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Have his ears vacuumed by an ENT. I also had mine done by an audiologist who had a vacuum. I need mine done on a monthly basis. Dry eyes are also one of the side effects I have experienced. My eye doctor prescribed FML (fluorometholone) drops. The…

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 · 1d

Jul 6, 2019  ·

Pityriasis Rubra...

38Eileen Schukis, Carol Lewis and 36 others
50 Comments
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I bought myself a robot vacuum cleaner that ran daily and took the worst, so I didn’t have to vacuum every day.

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 · 1y

Jun 28, 2014  ·

Pityriasis Rubra...

  · …You shed almost as quickly as you vacuum out your car (or carpet or rug) What about you?

7Eileen Schukis, Cindy Parrish Mullins and 5 others
22 Comments

May 5, 2014  ·

Pityriasis Rubra...

  · …I have carpet bettels. I have to vacuum every day??? They festa in skin grrrrr

33
14 Comments

Mar 4, 2016  ·

Pityriasis Rubra...

  · Some days you have to laugh to keep from crying. Just got shingles along with my prp even though I got the shot. So I can’t have my humira until they see how bad the shingles get. Very painful by the way. Then to top it off my best friend the vaccum dies. Oh this life we live.

9Christine Günther and 8 others
16 Comments
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Kathy — I was inspired by your “laugh” comment. So here it goes — just for fun:

With über ultra rarity, a skin disease called PRP…

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 · 4y

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Edited

Sep 6, 2015  ·

Pityriasis Rubra...

  · Hi all, new to the group . My husband was diagnosed with prp in early July. After doing tons of research he hasn’t seen one area really addressed. How did you all handle employment after diagnosis, and especially in the early acute stages ? Did you take short term disability, have to quit your job, changed jobs, or just kept working right through it all. Being in sales and wearing business attire slathered up in oil or cetaphil 4 times a day, ain’t great . please share . Thanks.

2You and 1 other
12 Comments
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It depends on what your job is. I worked in an office at a desk job and was able to keep working through out it all. I had to do a lot of explaining to people who thought I’d received too much sun. I also had to assure people that PRP was not contag…

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 · 5y

Dec 4, 2016  ·

Pityriasis Rubra...

  · One of my outer ears is clogged so I can’t hear well. I have never had anything like this before. I assume it is dead skin cells. I am thinking about using “Debrox” brand earwax removal kit, which contains carbamide peroxide. One of the warnings is, do not use if you have irritation or rash in the ear. My ears aren’t particularly irritated or red. Do you think it is OK to use it?

33
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I can only speak from my personal experience, but my ENT (Plano, TX) used a machine that included a microscope and micro vacuum. There was no pain. Within a few minutes per ear I could hear again.

You can’t buy this at Walmart.

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Edited

Jul 12, 2016  ·

Pityriasis Rubra...

  · This may sound a bit ridiculous, but do we still have fingerprints? For the life of me, I cannot see them anymore through all of the peeling! Ugh! So tired of people staring at my hands as though I have an incurable disease……..Right?!

3Ginny Maxwell, Eileen Schukis and 1 other
31 Comments
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Lmao oh yeah Bill, we need to take the robot vacuum with us!! Or maybe ill just raid my piggy bank lol

 

Unhide

 · 4y

Jul 29, 2017  ·

Pityriasis Rubra...

  · Update 1: as my legs lose their overall redness, I can see that I still have some red spots and blotches and red follicles underneath. That was unexpected. I assumed they were long gone. Here is a shot of my lighter leg with my redder arm as comparison.

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Martin Wedge

Me too!!!!! I am so sick of it all that I’ve stopped being as conscientious about vacuuming etc. My car is a disaster area and one room hasn’t been vacuumed in several days. I can’t keep up! I did vacuum out the dryer vent (OMG–yuck!) and…

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 · 3y

Oct 25  ·

Pityriasis Rubra...

  · Since July 2020 PRP covers my entire body which causes terrible itching. Now that my skin has completed a scaling function I can control the itch with Sarna sensitive skin lotion. This past week was my worst with severe sweating and chills that keep me up all night. Any recommendations to overcome this new PRP adventure.

5Sandi Hartman and 4 others
9 Comments
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It is a dreadful disease. Stay moisturized with a good vitamin E oil, cocoa butter, shea butter combination. Keep hydrated, and get as much rest as possible. Soft inexpensive cotton clothing (everything gets ruined from creams). And a good vacuum clean…

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 · 1d

Sep 5, 2015  ·

Pityriasis Rubra...

  · Just over 2 months into this thing called PRP. June 27 had what I thought was a sunburn on face and progressed quickly from there. Turned into full body erthodermic. Painful bright red, skin peeling off in sheets. I have a couple of questions for the group. How many have experienced this over the entire body ? I have already had my hands and feet turn into leather gloves and peel off. Does this happen once or does it keep occuring. Thx

22
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I would welcome the cold weather. Love to take a walk during the day. Too hot to do down here in Florida right now. My new normal went from from a 15 minute SSS routine in the morning. Now I have a prep ritual that is longer than my wife’s. Undress…

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 · 5y

Oct 27, 2015  ·

Pityriasis Rubra...

  · Somedays I want to scream! But not for me, for my family member that has PRP. I watch when he doesn’t realise, I see the struggle, the frustration, the ‘why me’. To endure one disease is enough for anyone, to endure two isnt fair! When I first joined this group I was unsure what it could offer me, other than info. I saw/see all the bad pictures that are so familiar. I hear the bad things about meds, the negatives about everything and anything! BUT THEN! ….I see beautiful Ginny Maxwell son, looking so much better…lovely Brenda Masters and her amazing photography, Tierney Lynch Ratti with her kind welcoming words. Bill McCue with his time and patience to help this disease be noticed…..oh I could go on and on about the POSITIVES. Even today when I feel so sad to watch someone I love endure this evil disease….this facebook page has made me strong again! See the negatives but always look for the positives too. Thats the way to get through this. End of todays essay lol sorry folks xx hugs to those that what them xxx

30You, Christine Günther, Ginny Maxwell and 27 others
5 Comments
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I wonder if Dyson vacuum cleaners warranties are still valid for PRP household! Lol i think my year old cleaner is crying out for a holiday ……

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 · 5y

Mar 2, 2016  ·

Pityriasis Rubra...

  · We have a new member from Scotland. His name is Bill Farquharson. He posted a message to the PRP [email] Support Group and I’m helping to get that message out to the PRP Facebook Community. He posted the FOLLOWING message: After a week of 30mg a day Prednisolone I am now on 25mg Acitretin for foreseeable future. Together with moistureisor this seems only treatment for now. I seem to be only UK member of this sight is that correct? I am to be monitored fortnightly until further notice and was warned it will get worse before any improvement likely. I already know this as now completely covered from head to toe with red patches now joined up. Itching is intense and almost impossible not to scratch. I consider myself very lucky to be under the UK National Health Service which is of course completely free to users and can not begin to know how people must worry if having to fund treatment themselves. I will continue to give progress reports and would welcome any advice from fellow sufferers as to anything which they have found to alleviate symptoms. I asked consultant about food and she was adamant that a balanced Mediterranean diet was the correct way to go with no sugary sweets in fact avoid sugar. I look forward to hearing from fellow members but as Doctor says positive mental attitude even in adversity can works wonders. Cheers Bill

8You and 7 others
35 Comments
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The following comment from Lorna Roberts to Bill’s original post to to the PRP [email] Support Group is re-posted here with Lorna’s permission.

There are several members from the U.K. Surely you will hear from them. …

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 · 4y

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Edited

Oct 26, 2015  ·

Pityriasis Rubra...

  · I am sick and tired of washing my sheets and blankets everyday. It’s like my body has dandruff. I don’t quite know how else to explain it. My dislike for today. Might seem insignificant compared to everything else that is going on, but it hurts to walk. I’m just really tired now, did not get much sleep last night. Thanks to all of you who have accepted my friend requests. Have a great day!

10You, Eileen Schukis and 8 others
24 Comments
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It will get better! And some people actually use a small vacuum on their sheets. For the floor, I use a light weight cordless Shark vacuum. It is so easy. I keep one upstairs and down.

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 · 5y

Apr 16, 2016  ·

Pityriasis Rubra...

  · Thank you for letting me join your group. Here’s a brief summary of my time with PRP so far. I was a 47 year old fit and healthy man living on the south coast of England with my family. I was keeping fit, go to the gym regularly, do circuit training twice a week, running, swimming and cycling. Back at the end of January this year I was planning my training to do some triathlons this year and was looking forward to the coming spring and summer. However, I started to develop some spots on my chest, which I put down to just the time of year and being a bit under the weather. The skin on my torso started to show signs of developing a rash (I have been since my late teens prone to post-viral rashes). The coverage and depth of this reddening started to increase until it covered most of my torso, upper arms and the tops of my legs. I saw the GP and he suggested stopping using soaps to wash in and see if that would stop it, assuring me it wasn’t anything infectious. My condition worsened, so I went back to the GP’s who gave me a short course (5 days) of steroids to see if this cured the problem. Initially it seemed to work with the redness retreating up my arms and legs. However as soon as I finished the course of steroids it got worse and more intense and the skin loss started in earnest. I was struggling to control my body temperature and was constantly thirsty. I went back to the GP’s for the third time and on seeing a different doctor, who was concerned it was serious immediately booked me to see a Dermatologist the next morning and said I would probably be admitted to hospital (5th February) The Dermatologist’s initial diagnosis was for Erythrodermic Psoriasis, for which I was prescribed Ciclosporin. I had blood samples taken as well as punch biopsies taken out of my back. After a couple of days in hospital I was allowed home. Over the next couple of weeks it became apparent that the treatment wasn’t working. My wife rang the Dermatology department and I went and saw them. The biopsy results were back and the diagnosis was changed to PRP. I should stop taking Ciclosporin and take the retinoid Acitretin instead. I’m on 35mg daily. The Acitretin took about 3 weeks to have an effect. I’ve been taking it for 6 weeks now and after 9 weeks since being in hospital I’m starting to feel better, less tired, with a lot less skin shedding. I’ve lost a lot of my hair and whereas before I would never be cold, I always have 3 layers of clothes on currently. The worst time was after about 7 weeks ago when I couldn’t walk, had an eye infection, deaf and constantly cold. I went back to the Dermatologist this week whom was happy with progress under the current treatment regime, suggested spending some time in the sun (avoiding the midday sun) and me to see them again in 6 weeks. Having never been ill in my life, apart from the standard minor ailments, this has been difficult to deal with. My family have been important in helping me cope. The GP’s surgery have been excellent as have been the Dermatology nurses and staff. Having researched PRP on the internet I think in many ways I have been lucky with it and hope the condition improves over the coming weeks and months.

5You, Eileen Schukis and 3 others
9 Comments
1 Matching comment

Get your ears vacuumed out, the shedding of the skin occurrs in the ears too, the skin and wax mix and form a plug. The ear Docs have a great tool to deal with the problem, a little vacuum, works great. I went at least twice a month for a very long tim…

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 · 4y

Apr 9, 2019  ·

Pityriasis Rubra...

  · Had a hearing test yesterday. My left ear didn’t even register at the normal range. She cleaned out my right ear which had a lot of debris on the ear drum. The left ear they tried to clean out but the debris was so impacted they couldn’t do much. I go back in two weeks. I’m to do mineral oil drops in my ear in the meantime.

12Jean Leavitt Norton, Leslie Lagasse and 10 others
24 Comments
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Tierney Lynch Ratti

— when was the last time you had an ENT specialist vacuum your ears? There was a time I went every 30 days and even then, the wax “jelly bean” was significant. When the otorhinolaryngologist (pronounced OH-toe, RYE-no, lair-in-OL-o-…

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 · 1y

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Jan 15, 2017  ·

Pityriasis Rubra...

  · Can anyone comment on hearing loss with PRP or inflammation in the ear ? My eyes were cleaned not even a week ago and not full of flakes just wax buildup , my eyes r inflamed I guess no surprise my ear would be as well ? Both mostly on right right side . I feel my ears pooping n pressure almost like when u get off the plane or landing but doesn’t always clear. Gets worse as the day goes on ..This disease is so odd.

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11 Comments
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What he suggested for me was to use some mineral or olive oil a few drops after a shower , if I need wax cleared to come see him and he will vacuum or flush them again

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 · 3y

Jul 18, 2019  ·

Pityriasis Rubra...

  · hi everyone !this is cris from new zealand my partner barry has been struck with this prp condition hes had for a month now and it has gradually gotten worse. it now covers most of his back and stomach and has spread to his arms and legs. we would love to talk to someone who has been through this. he is currently taking Methotrexate tablets we are worried that is not getting any better. could you please help us. thanks

12Ceci Augenius, Sandi Hartman and 10 others
50 Comments
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Hang in there, together. It does get worse before it gets better, but he will improve gradually. Lots of rest, Eucerin cream, coconut oil, & patience. And a good vacuum cleaner for all the skin shedding. It sucks, for sure, but there’s a very loving & …

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 · 1y

Jan 30, 2019  ·

Pityriasis Rubra...

  · New to this group and this diagnosis. Age 48. Just 9 days into first symptoms, and initial diagnosis from dermatologists yesterday of PRP. Biopsy to confirm. Glad to learn of this group and survival guide! Forgive repeat questions but is a symptom also dry mouth and serious thirst? Any foods/drinks recommended or not? Spreading more each day, unsure how far or severe it will get. Hanging in. Thanks for the welcome.

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14 Comments
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Mark, this is an incredible, reassuring group of people that reminds us all daily we are not alone! Just remember we all travel with this condition on separate roads, what works for one may not work for you….stay positive, hydrated, get on a good sk…

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 · 1y

Jan 22, 2017  ·

Pityriasis Rubra...

  · I can finally vent: It is unspeakabley distressing to shed skin by the tablespoonfuls! At some points, more like sandwich-bag-fulls. I change in the bathtub. What a wretched ailment for someone who has always hated vacuuming and the feel of lotions on my face!

12Carol Lewis and 11 others
49 Comments
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by then, you will need a new vacuum cleaner, but hey, splurge!

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 · 3y

May 29, 2017  ·

Pityriasis Rubra...

  · I am soooo miserable today with a major flaking, shedding episode and my skin is so sensitive and burning/itching, I can feel every square inch of my outer covering. But in an attempt to see humor in my life, I realized what a true definition of counter-productive is: vacuuming with one hand while mindlessly scratching off flakes with the other.

21Murray Rose, Eileen Schukis and 19 others
12 Comments
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I now have an upstairs vacuum and a downstairs vacuum, a nice soft broom, and several dustpans with soft brooms. What I really need is a roomba iRobot programmed to “heel” and follow me around the house!!

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 · 3y

Jul 25  ·

Pityriasis Rubra...

  · Thankful for advice Hi Since about 8 weeks in the 1st flare & PRP diagnosis through biopsie Now this How often does one shred in a flare? .. this is the first complete body peeling. scared. been 12 days clinic. since 5 days isotretinoin, which I guess started to kick in now. Hugs ❤️

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5 Comments
1 Matching comment
Your shedding looks just the same as I had. It came off in sheets from knees to ankles. Shedding happens over and over so keep the vacuum handy!!!

 

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 · 13w

Nov 13, 2016  ·

Pityriasis Rubra...

  · So last night I felt like I was really showing some improvement in the Humira but it is slow. Shedding buckets of flakes today and my face looks fairly awful but overall a bit less red and haven’t been burning and stinging, but more itchy. I can deal with that I think. Just wish my face looked better!

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12 Comments
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I look like hell today and need a vacuum cleaner for my ears!! Ugh– maybe the Acitretin leaving my system before the Humira kicks in?

 

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 · 3y

Jan 30  ·

Pityriasis Rubra...

  · I just want to thank everyone for the support and comments since joining this group! My husband seems to be at the acute stage and the measuring cup is the amount of skin he is sweeping up after undressing and shaking his clothes off. Between 1 and 1 1/2 cups in a 24 hour period. He did 8 doses of Acetretin and couldn’t bear the itching and flaking and he was so agitated on it, so he stopped. Not sure if it was the meds or the disease progression. Any thoughts? His worst symptom is the swelling of his legs and feet that have kept him mostly in the recliner for about 3 weeks. My very active, athletic husband has had lots of anxiety up to this point and now must decide if he is willing to try a biologic….more anxiety….. I would love any tips to reduce the swelling so he can get shoes on and get moving. On a promising note…he has been waking with sweat on his chest the last 3 days! First time in 5 months he has sweat! I hear that’s good!?

20Sandi Hartman, Leslie Lagasse and 18 others
44 Comments
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Ah yes!! Sweeping up the skin – what a delight that is. My friends also couldn’t believe the amount that came off my body daily and still does to a lesser extent now. I have had to have my carpets steam cleaned and I’ve lifted all rugs – replacing them…

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 · 38w

Apr 24, 2016  ·

Pityriasis Rubra...

  · Ok friends, I think I’ve been in denial, but time to do something about these ears. Sort of hurt sometimes, but mild, but yesterday I went up the mountain, and increasing elevation really just made me yucky, and I think a lot due to the ears clogged issue. I think I’m hearing ok (for now), and it’s not yet a big deal, but I want to address it before it is. Is there any at home remedies people do? I have tried hydrogen peroxide but doesn’t seem to do much. (and I am a guilty avid q-tipper)

16 Comments
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The little vacuum really works and doesn’t hurt. ENT department did it very matter of fact. Simple, no fuss.

 

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 · 4y

Sep 7, 2018  ·

Pityriasis Rubra...

  · My PRP journey  · My PRP started in March 2016 – now 2 1/2 years into this condition… Started with a rash and progressed into PRP with full body erythroderma…

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15Jan Tennant, Eileen Schukis and 13 others
33 Comments
1 Matching comment

I feel so sorry for you..I think yours is worse than mine was..didn’t have the damaged finger nails nor the red eyes. I peeled from head to toe and had to vacuum my bed and floor around it every day. Hands and feet look very familiar. This was all 21 y…

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 · 2y

Jul 12, 2015  ·

Pityriasis Rubra...

  · New to PRP and new to this group – and what a fantastic group to be a part of – As a newbie to PRP – rash started in April and did not take long to take over wondering what other people’s experiences are in terms of handling the treatment – I find one of the biggest challenges is using the Eleuphrat ointment (corticosteroid) twice a day all over the body – it sticks to everything and feels cold and clammy – I am thinking of buying half a dozen pairs of cotton pyjamas and just living in them – how do others handle this – also, I originally thought – and my specialist led me to believe – that I would be back in mainstream life pretty quick – but I am getting the message that it is years rather than months?

6You, Eileen Schukis and 4 others
12 Comments
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Diagnosed in may, onset was april, so luckily didnt have to wait ling until we realised it was PRP….although my partners hands and feet keep shedding badly, his face is clear….the redness over his body isnt to bad…..he is on aciterin which seems …

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 · 5y

Aug 7, 2017  ·

Pityriasis Rubra...

  · Lets do something fun. Post something you now think that you would never have thought of prior to PRP. I’ll start I wish I could put some sweat rings on my work shirt

9You, Eileen Schukis and 7 others
66 Comments
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Never thought we’d come to depend on a hand vacuum like we do. Try to keep up with the skin! Can’t. Then try to depend on your sense of humor!

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 · 3y

Jul 13, 2015  ·

Pityriasis Rubra...

  · …seek the care of an ear doctor, they can vacuum out the loose skin. Do not put liquids in your ears. Pay attention to your mouth and gums, they dry out too, and you can get into dental issues. Drink plenty of fluids, use mouth washes for dry mouth. Brush your teeth regularly. For aches and pains, you can take what ever you are used to taking. Tylenol, Aleve, etc. The most important thing is to be sure you have PRP and not one of the other disorders that are more serious. If you are close to a University Medical School, I would advise seeking care at their School of Dermatology. Keep moving, go out, walk, socialize. You will get better. It is tincture of time and a lot of patience. You will get better. Lorna —– Original Message —– From: “Mamasutto” <suttos@westnet.com.au> To: prp-L@lists.tip.net.au Sent: Saturday, April 11, 2015 9:06:13 PM Subject: [PRP-L] Fwd: PRP

19You, Christine Günther and 17 others
2 Comments

Jan 26, 2016  ·

Pityriasis Rubra...

  · Asking a question instead of answering for a change… If you were only given the chance to give ONE tip to a new PRP’er what would it be? Mine would be the bath towel to sleep on trick…..

6Christine Günther and 5 others
22 Comments
1 Matching comment
Buy a decent vacuum! Lol

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 · 4y

Sep 24, 2017  ·

Pityriasis Rubra...

  · It was just about a year ago today that I noticed this strange little spot on my chest right over a healed scrape on the skin. Beginning of my long story…

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I remember back in January when I really realized it wasn’t going to just go away I thought that of all the things I’ve worried about in life, it never occured to me to worry about getting a rare, unpronounceable skin disorder. Or that I’d keep brooms,…

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 · 3y

Sep 10, 2017  ·

Pityriasis Rubra...

  · I am hoping to go back to work in a month as a rural mail carrier. My route is typically 2.5 hours delivering mail from my car. I am looking for any advice, experiences, and tips.

33 Comments
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I also returned to work while suffering from PRP. Most people thought i just had been in the sun too long. My biggest problem was the flaking! I would stay late and clean up my area so that the flakes wouldn’t gross out my co-workers. A friendly hou…

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Oct 14, 2017  ·

Pityriasis Rubra...

  · Just started the sunday morning ritual of attempting to get rid off all the dead skin since I last did it.

12Murray Rose, Eileen Schukis and 10 others
9 Comments
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Yes. I used a hand held vacuum every day. My floor and my bed.

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 · 3y

Nov 20, 2017  ·

Pityriasis Rubra...

  · Penis Scrotum Vagina Got your attention? We talk about many personal things on this site but some are obviously too personal to discuss publicly. I was recently contacted by a member asking for advice on his itchy scrotum. Thankfully, I’ve never had need to post a question on itchy scrotums. (As PRP went down my torso, I took preventive measures and drew a large detour sign (black and yellow stripes) just below my navel. Not sure it helped, but what can I say?) I did a search of the site for those three topics and surprisingly, considering the thousands of posts on the site, there was not one post that mentioned or discussed problems with any of the three. Tierney and I have come up with a plan to address the need for advice on those topics. Gentlemen, if you can help the member (no pun intended) please contact me via personal message with your advice. I will delete your name and then post your comments on the site. Tierney will do the same for the Ladies. So fellows can you help out the gentleman now? Please PM me at your convenience.

11Traci Royalty Whipple, Jane Gobin and 9 others
37 Comments
1 Matching comment
There is just no dignity in this disease! But most people don’t know what our vacuum cleaners and gynecologists know about us, thank goodness! But the errant flakes and the nose dripping suddenly with no warning. That’s almost worse.

 

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 · 2y

Nov 10, 2019  ·

Pityriasis Rubra...

  · Good Morning. I have been having a rough few months and this week it is getting worse. My feet are burning and swelling slightly and I am having difficulty walking, and my legs are getting worse each day. They are burning and the redness is now spreading to the back of the legs. I have an appointment with new dermatologist at the end of November, but I am thinking I might need to go to the energy room. I have had PRP for three and one half years, but until a few months ago it has been spreading slowly. Those that have gone to the emergency room, I am wondering were you admitted or just told to elevate legs and feet. I am wondering if this is the way to go or just wait and see primary doctor on Tuesday since tomorrow is a holiday.

5Ceci Augenius, Leslie Lagasse and 3 others
30 Comments
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Jean Leavitt Norton

The oedema in my legs and feet lasted 6 weeks. I couldn’t flex my feet or my knees – I thought my skin would split, it got so bad. But, as with all things PRP, it passes …… eventually! Elevate legs above waist (I still do), take…

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 · 50w

Jan 23, 2016  ·

Pityriasis Rubra...

  · Great I just looked it up before I asked and this is what I found. Sometimes, hearing loss can occur with blockage from the buildup of skin. I’m losing my hearing, has anyone else had this problem and what did you do about it??

5You, Brenda Masters and 3 others
65 Comments
1 Matching comment

I went once a month. Doctor cleaned out the debris using a “vacuum”. Worked great!! I was instructed not to put liquids in my ears, ever. I was given protectors for my ears when I showered or washed my hair. If I recall correctly, they were purchased f…

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 · 4y

Jan 15, 2019  ·

Pityriasis Rubra...

  · How did everyone get diagnosed? My doctor diagnosed me with this after skin biopsies came back as negative for everything else. Most doctors thought I had psoriasis, but the skin biopsy was negative for that. I also have lupus so some doctors think I just have a rash related to lupus. A highly skilled Dermatologist is who diagnosed me with PRP. My palms are the worst, but I have it in other places too.

6Sandi Hartman, Anita Storment Ray and 4 others
17 Comments
1 Matching comment
The first time I had PRP I used a hand vacuum to clean my bed and the floor around it..had to use every day or more.

 

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 · 1y

Jun 8  ·

Pityriasis Rubra...

  · Thank you for accepting me. My husband was just dienosed Friday. It all started a few weeks ago just out of blue doctors all around here kept saying sun burn sun burn even though he always has on pants long sleeve shirt and hat and it’s from top to bottom. He told doctors he don’t sunbath in nude. Ended up in Galveston ER and they did the test and that’s how we found out. I thought having cancer was overwhelming. I had never in my life heard about it and in for a fight with insurance to get his meds. And me not being able to make home fell better and when I’m sweeping up all the dead skin I know that has to make him fell bad but I’m sweeping up like a cup a day and cleaning the bed every day and all I want to do is make it all better.

22Murray Rose, Ceci Augenius and 20 others
21 Comments
2 Matching comments

I so know, as the caregiver, how you feel. It’s an awful disease. Hang in. It takes a while but it will go away. This page is a really good, resource, support & comfort. We burned through a vacuum cleaner & 2 hand vacs in 20 months of my husband’s prp …

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 · 20w

Dec 11, 2017  ·

Pityriasis Rubra...

  · My wife just showed me a collection of my shedding from 1 room. (1 days worth). I am shedding more than our dog

15Eileen Schukis, Anita Storment Ray and 13 others
29 Comments
2 Matching comments
We have 4 prp peeps here…the irobot vacuum is our best friend

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 · 2y

Aug 25, 2016  ·

Pityriasis Rubra...

  · Hi everyone, I’ve recently been diagnosed with PRP and this is the first time I’ve posted on here. I’ve gone through the manic skin-shedding phase. I’m still losing dry skin but it’s more of a dust now rather than the trail of fish-scale type flakes I was leaving all round the house. Regret having black kitchen floor tiles big-time! I don’t feel too bad generally, certainly don’t have the energy levels I had. The problem I have is the swelling of my ankles and lower legs. Qutie painful after a couple of hours on my feet, especially as my feet are still quite tender after losing the thick skin off the soles. I’m guessing some of you have the same problem adn wonder what you all do to ease it? Thanks, and hope everyone is dong OK

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30 Comments
1 Matching comment
Sucks that I have to keep a vacuum cleaner beside my bed!!!

 

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 · 4y

Jun 29  ·

Pityriasis Rubra...

  · This my wife’s FB page but I’m the one with PRP. Every day she looks and cleans up after me, She’s the greatest. There’s only one thing she does that aggravates me. Every day when she sweeps the floor and the dustpan is full of my powdered skin she throws me in the garbage, which is OK. BUT, when she’s mad at me she flushes me down the toilet. Now that aint right. No respect. What do you guys think?

66Barbara Young, Carolyn DeNina and 64 others
25 Comments
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Lol! Well I used to suck my husband up in the vacuum lol

 

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 · 17w

May 1, 2015  ·

Pityriasis Rubra...

  · So ….I was thinking if I had saved all these Flakes I sweep up daily, from the very START (5-2013) I might have enough for my very Own small private beach! Just a Vent

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20 Comments
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I was just thinking we should some be able able to get free dust busters or vacuum’s , like the free lotion skin society was able to do for us.Now that would nice too.

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 · 5y

Sep 16, 2019  ·

Pityriasis Rubra...

  · What’s up PRPeeps! After about 9 months with this disease and finishing my Cosentyx trial, I’m finally going back to my jiu jitsu gym to train. I’ll probably stay after to help sweep up because you know… But we’re about to find out if I can sweat or not. Wish me luck!

27Barbara Young, Ceci Augenius and 25 others
19 Comments
1 Matching comment
Is Cosentyx related to Acitretin? Are you still on it? My husband is 25mg and so far the same—got vacuum daily, hehe

 

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 · 1y

Oct 16, 2018  ·

Pityriasis Rubra...

  · Does anyone else have problems with shedding in their ears my partner has had ear infections in both ears on going but severely for the last 5 wks antibiotics clears it then because of All the skin it just recurs. We’ve attempted to get the gp to clean them but they’re reluctant because of the condition…. Does anyone get there ears cleaned without problem also heard of micro cleaning which we could pay for… any info gratefully recieved x

4Teri Rosalez and 3 others
19 Comments
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I found the vacuum to be the best also.

 

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 · 2y

Jun 23, 2019  ·

Pityriasis Rubra...

  · Hi all! So, if someone can find it useful, that’s my story (so far). I was in Brasil, for work, in early February. I was in a huge FIAT plant to make tests on some vehicles. I was carrying on activites that involved climate chambers tests, so while outside there was 35/40 °C, inside these chamber the temperature was about -5 °C… And in few days obviously I fell ill: strong bronchitis and high fever. During that days I noticed the first spots on my chest: PRP was starting its process.Fever passed away in a week, bronchitis lasted longer than that (at least one month). Once back those spots were growing in size and number. They started to appear on arms too, and one day suddendly a my palms turned red and itchy. The doc suspect some kind of allergy, but it wasn’t so confident in it… And littles spots grown, and merged turned in big stains. In three weeks they almost covered completely my arms (with my chest and back, of course)… A dermatologist diagnosed a guttated psoriasis, and prescribed me an unguent made of fluticasone propionate. Obviously no improvement happened, and also legs started to be undermined. My brother is an ER nurse since many years and looking at me at that time said “hospital time now”. I went to Modena general hospital (the nearest one with a dermatology specific ward) and when I was hospitalized, the first ward doctor that saw me looked stright to my isles of sparing … and finally diagnosed PRP. I started 25 mg at day of Zorias (acitretine) from the day after. I remained at the hospital for a week, and during this time, every day I used fluticasone propionate two times (morning and evening), fully covering myself (even if the head physician itself admitted that steroids are pratically useless with PRP). So, when I was dismissed from the hospital, my acitretine dose was increased to 35 mg per day, but while some symptops seems getting better (I was turning a little bit lighter color, just in the upper half of my body), my legs were really suffering: feets started to be really swollen at the end of the day (and the lower part of the legs too), preventing me to walk normally. It took more or less two or three weeks to fit again the feet in the shoes and starting to walk again properly. One month after leaving the hospital I was looking better, so the head physician told me to lower acitretine to 25 mg per day … In hindsight it was not a good idea… After a month I saw that I was turning red again (slightly) .. and when I had another visit (two months from the other one) they said that I was too much erythrodermic and I needed to switch back to 35 mg of acitretine as soon as possible (and so I did). This happened two weeks ago, and now I’m clearly losing “tons” of dry skin as usual…. I still did not notice big changes, but that’s the PRP is: when something changes … changes VERY SLOWLY. At least in my case. I’ll had another visit in a couple of weeks at the hospital and we’ll see what the doc says. In the meanwhile I manged to being visited by a notable professor of dermatology (long experienced man, academic of some universities here in Italy), but also he told me that in my condition (that’s actually not so terribile) there’s no need to trying other treatments, because all of them can give worse side effects. So that’s what I’m doing. Wearing nitrile gloves during the day, cotton gloves by night. And two/three times at day I use Pierre Fabre Dexeryl Moisturizing Cream to my whole body. Finally, when I experience some painful skin crack, I use Altergen cream (made of hyaluronic acid and silver sulfadiazine), that normally recover the broken skin in a couple of days… Well, that’s all I think. Sorry for this long post, I hope it can be useful for someone. I have been quite detailed because I think that there must be some “scheme” that trigger this damned disease (and I suspect that genetics lead a major role in this). Have a nice sunday. Hugs to everyone!

24Murray Rose, Ceci Augenius and 22 others
26 Comments
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Rhonda Wagoner

thank you very much. Yeah , It’s a very good idea buying a vacuum cleaner like that!

 

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 · 1y

Aug 29, 2018  ·

Pityriasis Rubra...

  · 10 months into PRP and flaking is worse than ever! When will this ever stop!

12Leslie Lagasse, Anita Storment Ray and 10 others
19 Comments
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For my Mum, 3rd month was the craziest, piles and piles of skin. And as others said here, the flakes were defying gravity, appearing on every surface. That was 2,5 months ago. In the last week we didn’t even have to use the vacuum, no shedding (just a …

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 · 2y

Mar 26, 2018  ·

Pityriasis Rubra...

  · Photos from Murray Rose’s post  · Housekeeping and the guilt that comes with not being able to do it as often or as well as you used to. Here are a couple of things you can do. The third one is a quote from a member. Are there any other ideas that you use ??

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23Jan Tennant, Jean Leavitt Norton and 21 others
5 Comments
1 Matching comment

I like the vacuum idea,lol. I have no other advice to give, during my extreme initial stages I found it hard to cope with the day to day cleaning. I still have only one good day out of three that I feel like I get anything done. It’s a constant merry…

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 · 2y

May 18, 2017  ·

Pityriasis Rubra...

  · I just joined this PRP group today. My sister was recently diagnosed with PRP. I want to email someone that has PRP or has a loved one with PRP to discuss treatment in NC, VA, and SC. We are in NC, USA. Please reply if you are open to emailing. Thanks, Debbie Wittenberg

8Ginny Maxwell, Geri Blount and 6 others
31 Comments
1 Matching comment

I can answer # 3. Get a good vacuum. You will need it. Don’t bitch about having to use it EVERYDAY. Apply whatever ointments she has been prescribed to her back. She should do as much as she can for her own state of mind. Remind her–stress makes it wo…

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 · 3y

Jun 19, 2017  ·

Pityriasis Rubra...

  · Good Morning fellow PRPers – Have any of you had a constant feeling of itching. Last night I took Benadryl and woke up and am still itching. I am wondering if it is heat related as it is 90 degrees where I live. My home has AC so I am not feeling hot when I am at home which is most of the time. I am moisturizing five to six times a day. I am feeling a little crazy at the moment. Is this just a progression of this horrid PRP. Any suggestions?

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26 Comments
1 Matching comment
Yes. I itched all the time..use Atarax..had to vacuum my bed and floor everyday to remove the dead skin..miserable.

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 · 3y

Jun 3, 2019  ·

Pityriasis Rubra...

  · …the heat and loving it and my Dyson Vacuum cleaner is in use barely just once a week on my non carpeted floors. Halleluiah! Quote from a verse of one of my songs I wrote for teenage Acne Sufferers ” You’re reluctant to glance in the mirror, your face never seems to be clearer. Don’t worry so much! It’s transparent! people see beyond it” Acne Rock https://youtu.be/yJgCVN3cS_s Barry Gonen.

youtube.com

ACNE ROCK – © – Barry Gonen Originals – Negba

66You, Ginny Maxwell, Ceci Augenius and 63 others
37 Comments

Apr 27, 2017  ·

Pityriasis Rubra...

  · Hi there, thank you for approving my request to join your group. I’m German but I’m living in Cape Town, South Africa. I’ve been diagnosed with PRP in January’17. At the beginning I thought it’s just an allergy but it got worse. My Doctor believes my condition was triggered by the use of Antibiotics – Penicillin, which I had to handle for more than a week, to get my puppy well again as he was injured. This was in October ’16. Since I’m diagnostic and I dit not know anything about PRP I also must say my condition is not getting better. When I’m going through comments and pictures of few members, who are here in the group, I think I’m still at the beginning of this strange skin condition, which worries me. The purpose of joining this group is actually how you guys coping with this condition? What else I do have to expect? Is here or was there someone who got recovered from all this? My Dermatologist told me I have to live with it for the next 4 years. Goodness! Thank you for reading this! Best Kerstin

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74 Comments
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 · 3y

Sep 3, 2017  ·

Pityriasis Rubra...

  · So, whilst bathing/ soaking, i decided to submerge most of my face, ears are inflamed and fac e is also marked by prp… I began singing [ more like shouting lol] and now water is trapped in my ear… Itss freaking me out mainly because its impairing my hearing right now… But is this common, guys? Do ineed to be concerned about infection, seeking immediate help, im not sure what to ake of this currently. This is a new XP yikes

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I have said this before, we should not be putting liquids in our ears. The ear specialists has a nice little vacuum suction to clean the ears. This specialist instructed me not to put liquids in my ears. Ear wax and dead skin, add liquids and you have …

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 · 3y

Dec 6, 2019  ·

Pityriasis Rubra...

  · When does are body stop shedding skin everytime I move skin just falls off small flakey skin like dandruff looking

11
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For my husband, about a year of shedding, but like Bill says, everyone is different. We covered the leather furniture with sheets to protect them from all the oils etc and to keep the flakes out of the cracks. Also a robot vacuum became our best friend…

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 · 46w

Aug 28, 2019  ·

Pityriasis Rubra...

  · Start to another day. Looking forward to the day when there is No shedding.

36Ceci Augenius, Leslie Lagasse and 34 others
30 Comments
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The worst part of my shedding was when our trusty vacuum cleaner “konked out” . I mean, it had been a beast! Survived a couple of long haired dogs but PRP was it’s demise , I’m sure. I mean, brooms, (in what every configuration you can think of, work j…

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 · 1y

Jan 31, 2019  ·

Pityriasis Rubra...

  · It’s interesting how this disease changes daily or even more often with symptoms. Today my husband is having a lower back itch day, yesterday it was the shoulders. Changed the sheets today, all kinds of flakes in this house, constant sweeping. We are starting to think its the new normal.

3Teri Rosalez and 2 others
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Our new daily normal is sweep, vacuum, shake clothes out of doors and moisturizer head to toe many times a day. Anxious for all of this to end. I like my old normal much more than the new normal.

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 · 1y

Sep 4, 2018  ·

Pityriasis Rubra...

  · Read an interesting article today suggesting PRP might be an acute viral illness. So am wondering if anyone has tried anti-virals? The article was all about PRP.

11
41 Comments
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Interesting to speculate. Strictly speaking Koebner effect is rash or plaques appearing in preexisting sites of skin damage or scars. In

Jan Tennant

‘s case I guess the blisters were actually very early signs of the disease itself. Having said that when…

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 · 2y

Dec 7, 2016  ·

Pityriasis Rubra...

  · So, today my supervisor asked to speak with me in private — Apparently, at least one of my coworkers went to HR to complain about being uncomfortable with my disease — maybe I could be a little more considerate and make sure I am disinfecting and wiping down my work area and sweeping more often, because it’s making someone uncomfortable. Why yes, I did go home sick for the rest of my shift. Are. You. Kidding. Me?! No one is more acutely aware of how gross this disease is than me— how dare you?? Sooo angry, frustrated, and hurt. What would you do?? 🙁

1919
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What the hell?!?!? I firmly believe that the person with the biggest problem is the tosser that complained!!! Equailty and Diversity in the Workplace – how are you being treated as an equal??! If this is your work area and is not shared then what;s i…

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 · 3y

May 6, 2015  ·

Pityriasis Rubra...

  · The May 2015 issue of On the Road is NOW AVAILABLE exactly six months prior to the next PRP Awareness Day (November 6, 2015). In this Issue: (1) The proposed revision of the wildly criticized Healthline “Mildly Itchy” article about PRP. (2) An article detailing the incorporation of PRP Alliance, Inc. and the submission to IRS of the application for 501(c)(3) tax-exempt status. And so much more. Go to: http://prpalliance.com/wp-content/uploads/2015/05/May-2015.pdf

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Thank you Bill…..I loved reading every word of this article! I especially loved the comments at the end which only PRPers would understand!!!!! Who else would understand the fact that we have to vacuum the sheets! By the way I have to vacuum the floo…

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 · 5y

Mar 20, 2017  ·

Pityriasis Rubra...

  · So sometimes we just need to laugh at our misery 🙂 The other day I was vacuuming my slippers of all things and thinking to myself “I bet not too many people have to do this on a daily basis” and I just burst out laughing….please share something that you have found funny and frustrating at the same time.

24Jan Tennant, Bronagh Brigid Sas-kropiwnicki and 22 others
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Of all of the appliances to break, our central vac quit on Saturday. Still under warranty we took it back and exchanged it. Just from the amount of handling it took to get it unwrapped, the black plastic handle was coated in skin flakes. Hadn’t even tu…

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 · 3y

Mar 31, 2017  ·

Pityriasis Rubra...

  · Does more flaking I’m getting better or worse?

11
8 Comments
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It just means you need to moisturize more.
(And buy more vacuum cleaner bags!)
<sad but true!>

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 · 3y

Sep 24, 2016  ·

Pityriasis Rubra...

  · Daily struggle. Taking my clothes off to get in the shower just one time!! Ugh!!! I need to break up with PRP.

9Eileen Schukis, Carol Lewis and 7 others
56 Comments
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I bought a hand held vacuum to pick up my trail of skin. I not sure why, but the skin shedding bothered me more than the rest of PRP. I only leave small bits here and there now. the ones I hate the most are the ones on my iPhone glass, and the ones …

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 · 4y

 · 

Edited

Jan 25, 2017  ·

Pityriasis Rubra...

  · I’ve got a review with my dermatologist today and I’m going to be telling her the following and asking her what’s next for me due to the impact that PRP is continuing to have on me. 1. It continues to spread and fill in the rest of my arms and legs and the burning is pretty much non stop 2. The flaking is getting worse and I exfoliate constantly to the degree that I don’t want to go out or interact with people; in turn it makes me feel isolated and depressed 3. The redness and inflammation isn’t reducing 4. Although my mobility is improving and I can weight bear and get around better my feet are still cracking 5. I’ve been taking acitretin for two months and what are my options for ongoing treatment as I’m going into my eighth month with PRP. Please add anything else you think I need to discuss please. Thanks xx

6Murray Rose, Geri Blount and 4 others
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Murray Rose

my dermatologist , not sure why , I just used a vacuum

 

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 · 3y

Dec 16, 2018  ·

Pityriasis Rubra...

  · Last night I dreamt I was at the dermatologist’s office and he said I had black fur growing on my back. He showed it to me in the mirror. That’s a new one! Just think: our realistic dreams would be anyone else’s nightmares: skin peeling off in huge flakes, turning red. Mounds of skin in corners. Anyone else dream about PRP?

4Sandi Hartman and 3 others
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Hugo Ramirez

a good lightweight vacuum is your best friend!

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 · 1y

Jun 14  ·

Pityriasis Rubra...

  · I have a sweet odor on my skin that is horrible. Does anyone else? What have you tried to help?

5Sandi Hartman and 4 others
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Cheryl Deans Warfield

I so agree with you. My mattress and fav chair are still protected even though I shed very little compared to earlier. The moisturiser on the backs of my legs would soak into the upholstery round the bottom of my revolving chair i…

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 · 19w

Dec 16, 2015  ·

Pityriasis Rubra...

  · I am new to the group and it is my husband who suffers from PRP (diagnosed last year after much ado.) He tried Acetritin and it seemed to be working but he got severe pitting edema so off he went. He now will use only Eucerin and LOTS of it so it is everywhere and I do mean everywhere. I don’t know what to clean first – skin cells or messy goop of Eucerin! His doc is trying to get him to try Methotrexate but he is “sure” he will clear in the coming year so more and more Eucerin it is. I just wanted to let everyone know that Biersdorf has a program where they will send you 12 jars every 3 months with a doctor’s note FREE. Of course, he ran out and I contacted them to see if I had to get a new note and was told no but I had to wait for the 3 month period to be up. In the interim the wonderful person there sent me 4 coupons for free jars and 4 coupons for $3 off each jar. I did call early and they did send the next 12 early. So if anyone is spending a fortune on this stuff there is help! My husband is not a doctor goer nor does he like medications. I have MS and do daily injections which who knows what it will do to me in the future but for now it has begun to rot out my teeth and has caused my once straight hair to be frizzy curly. Don’t know if it helps or hurts but I can’t afford to be wheelchair bound so I take it with extreme prejudice but take it I do. I can’t convince him to take a biologic or even Methotrexate but he has agreed to start on a lower dose of Acetretin so we’ll see. As for diet – I do believe that there is a benefit from diet but he isn’t buying it and won’t give up what he likes for a disease which has already robbed him of his abilities to do thing. Such a conundrum. I am grateful to have found this group and thank you for allowing me to participate.

5Eileen Schukis and 4 others
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Ahh

Alexandra Scott

i feel for you and for the household vacuum! I know life is tough at the moment, but at least with PRP there is a life span to the illness. My partner is the one with PRP and another disease that has made him partically blind. I m…

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 · 4y

Jul 25, 2016  ·

Pityriasis Rubra...

  · Photos from Cami Cygnet’s post  · Grossing out the ER Doctor lol. Dermatologist is out of town so they made me go to the regular doc’s office so I can request some pain medication of some sort to help with the burning. My temp was 97 so they freaked out and sent me to the ER. Of course, now my temp is fine but I’m a circus side show waiting on the derm team. I left all the lotions at home so I’m flaking like crazy. Hope they have a shop vac. Looks like I get gabapentin though!

+2
1414
60 Comments
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Me too! I went to whirlpool therapy. I was on the burn unit in 2007 for 3 months. The doctors there told me how important it was to debris the skin. You are doing the right thing. A good pair of scissors and a vacuum cleaner are friends

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 · 4y

Jan 19, 2017  ·

Pityriasis Rubra...

  · You gotta be creative when you’re sitting in a car and flaking non stop.

21Geri Blount, Deidre Trahan Holmes and 19 others
33 Comments
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I know i shouldnt laugh

Martin

, but i am! Last year i covered the car seats in single quilt covers for each of the front seats, a double for the back. Why wasnt i as clever to just take the mini vacuum!? Lol

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 · 3y

Oct 10, 2019  ·

Pityriasis Rubra...

  · Can wait until I no longer have to smell that unique blend of moisturizer, cortisone cream and dead skin in the laundry room.

18Barbara Young, Eileen Schukis and 16 others
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For my husband’s laundry, I keep it separate, and use the hottest water and I put Lysol Laundry Sanitizer in the rinse cycle. AND I use unscented mild detergent! Also I LOVE my robot vacuum! Robbie is my best friend

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 · 1y

Jan 23  ·

Pityriasis Rubra...

  · My husband is having a hard time hearing in one ear this morning…is there anything I can do to clear ear canal?

1Ceci Augenius
7 Comments
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Go to an ENT and let them vacuum the ears out.

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 · 39w

Sep 2, 2017  ·

Pityriasis Rubra...

  · Umm doing a houseclean and guess who’s sweating ! Woo HOO

35Jan Tennant, Geri Blount and 33 others
16 Comments
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Well, thought it was worth a try … just had to vacuum my wife’s favorite dark coloured carpet cause when we baby sit our daughter’s white dog, her hairs show up too much for my wife’s liking. I warned my daughter that the next time it happened I was…

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 · 3y

Nov 25, 2015  ·

Pityriasis Rubra...

  · So is anyone else tempted to rent themselves out over the Christmas season as a human fake snow machine?

31You, Christine Günther, Ginny Maxwell and 28 others
20 Comments
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PRPers are just lovely seasonal people! I do find myself apologising to family and friends when they come round, either that or chasing him around the house with the vacuum! Week before last, we visited my best friend, who has a 5yr old daughter….my partner was extremely red that day, as normal Lillie-May went for a cuddle with him, until she realised how red he was…..she jumped up as fast as she could….i wasnt sure how to explain, so just use “hes just being a pretty red person today” she didnt like it and went to her mum for comfort. I have to say my partner was quietly upset by it all.

 

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 · 4y

May 13, 2018  ·

Pityriasis Rubra...

  · Has anyone’s skin peeled with PRP? And is it a good sign? I am used to flaking, a lot of flaking. A few days ago, my skin started peeling.

22
35 Comments
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Yes…I had to vacuum my bed and floor everyday!!

 

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 · 2y

 · 

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