NOTES — VACUUM

Feb 5 ·

· …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.

Jan 2, 2017 ·

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

May 17, 2016 ·

· 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

Jan 13, 2017 ·

· …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.

Jan 26, 2016 ·

· …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.

Jan 3, 2017 ·

· 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 ??

Jan 13, 2017 ·

· 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.

Oct 21, 2014 ·

· …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 ·

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

Jul 25, 2015 ·

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

Sep 8, 2017 ·

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

Dec 20, 2015 ·

· …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.

Nov 20, 2016 ·

· 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.

Nov 6, 2014 ·

· …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……

Jan 6, 2017 ·

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

Yesterday ·

· 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.

Jul 6, 2019 ·

Jun 28, 2014 ·

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

May 5, 2014 ·

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

Mar 4, 2016 ·

· 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.

Sep 6, 2015 ·

· 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.

Dec 4, 2016 ·

· 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?

Jul 12, 2016 ·

· 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?!

Jul 29, 2017 ·

· 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.

Oct 25 ·

· 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.

Sep 5, 2015 ·

· 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

Oct 27, 2015 ·

· 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

Mar 2, 2016 ·

· 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

Oct 26, 2015 ·

· 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!

Apr 16, 2016 ·

· 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.

Apr 9, 2019 ·

· 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.

Jan 15, 2017 ·

· 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.

Jul 18, 2019 ·

· 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

Jan 30, 2019 ·

· 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.

Jan 22, 2017 ·

· 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!

May 29, 2017 ·

· 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.

Jul 25 ·

· 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 ❤️

Nov 13, 2016 ·

· 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!

Jan 30 ·

· 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!?

Apr 24, 2016 ·

· 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)

Sep 7, 2018 ·

· 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…

Jul 12, 2015 ·

· 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?

Aug 7, 2017 ·

· 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

Jul 13, 2015 ·

· …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

Jan 26, 2016 ·

· 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…..

Sep 24, 2017 ·

· 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…

Sep 10, 2017 ·

· 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.

Oct 14, 2017 ·

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

Nov 20, 2017 ·

· 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.

Nov 10, 2019 ·

· 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.

Jan 23, 2016 ·

· 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??

Jan 15, 2019 ·

· 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.

Jun 8 ·

· 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.

Dec 11, 2017 ·

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

Aug 25, 2016 ·

· 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

Jun 29 ·

· 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?

May 1, 2015 ·

· 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

Sep 16, 2019 ·

· 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!

Oct 16, 2018 ·

· 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

Jun 23, 2019 ·

· 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!

Aug 29, 2018 ·

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

Mar 26, 2018 ·

· 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 ??

May 18, 2017 ·

· 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

Jun 19, 2017 ·

· 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?

Jun 3, 2019 ·

· …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.

Apr 27, 2017 ·

· 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

Sep 3, 2017 ·

· 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

Dec 6, 2019 ·

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

Aug 28, 2019 ·

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

Jan 31, 2019 ·

· 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.

Sep 4, 2018 ·

· 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.

Dec 7, 2016 ·

· 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?? 🙁

May 6, 2015 ·

· 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: https://prpalliance.com/wp-content/uploads/2015/05/May-2015.pdf

Mar 20, 2017 ·

· 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.

Mar 31, 2017 ·

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

Sep 24, 2016 ·

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

Jan 25, 2017 ·

· 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

Dec 16, 2018 ·

· 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?

Jun 14 ·

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

Dec 16, 2015 ·

· 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.

Jul 25, 2016 ·

· 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!

Jan 19, 2017 ·

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

Oct 10, 2019 ·

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

Jan 23 ·

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

Sep 2, 2017 ·

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

Nov 25, 2015 ·

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

May 13, 2018 ·

· 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.