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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· 1d
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.
Dec 30, 2016 ·
· 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 ·
· 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?
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 ·
· 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.
, 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 ·
· …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.
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 ·
· 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.
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 ·
· 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.
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· 3y
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.
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 ·
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· 1y
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.
With über ultra rarity, a skin disease called PRP…
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· 4y
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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.
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 ·
· 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?
You can’t buy this at Walmart. 
…
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· 3y
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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?!
Unhide
· 4y
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.
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 ·
· 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.
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 ·
· 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
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 ·
· 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
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· 5y
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
There are several members from the U.K. Surely you will hear from them. …
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· 4y
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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!
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· 5y
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.
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 ·
· 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.
— 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 ·
· 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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· 3y
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
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 ·
· 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.
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 ·
· 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.
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· 3y
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 ❤️
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· 13w
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!
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· 3y
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!?
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 ·
· 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)
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· 4y
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…
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 ·
· 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?
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 ·
· 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
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· 3y
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…
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 ·
· 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.
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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· 3y
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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.
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· 2y
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.
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 ·
· 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??
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 ·
· 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.
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· 1y
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.
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 ·
· 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
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· 5y
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!
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· 1y
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!
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 ·
· 10 months into PRP and flaking is worse than ever! When will this ever stop!
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 ·
· 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 ??
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 ·
· 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
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 ·
· 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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· 3y
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.
ACNE ROCK – © – Barry Gonen Originals – Negba
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
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 ·
· When does are body stop shedding skin everytime I move skin just falls off small flakey skin like dandruff looking
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 ·
· Start to another day. Looking forward to the day when there is No shedding.
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 ·
· 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.
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· 1y
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.
Interesting to speculate. Strictly speaking Koebner effect is rash or plaques appearing in preexisting sites of skin damage or scars. In
‘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 ·
· 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?? 🙁
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 ·
· 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
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 ·
· 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?
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· 3y
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.
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
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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?
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 ·
· 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.
Ahh
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 ·
· 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!
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· 4y
Jan 19, 2017 ·
· You gotta be creative when you’re sitting in a car and flaking non stop.
I know i shouldnt laugh
, 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 ·
· Can wait until I no longer have to smell that unique blend of moisturizer, cortisone cream and dead skin in the laundry room.
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· 1y
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
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 ·
· So is anyone else tempted to rent themselves out over the Christmas season as a human fake snow machine?
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· 4y
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.
