Second Look — April, 2019

 


Editor’s Note: Each month members of the PRP Facebook Community start between 150 and 200 conversations that range from questions about “what works and what doesn’t work” to general appeals for advice. Since the start of PRP Awareness Month (November 1, 2018), well over 1,200 PRP Facebookers in the Land of Chat have been living up to their moniker.

✽  Posts: 928 (average: 155 per month)

✽  Comments: 13,659 (average: 2,277 per month)

✽ Reactions (e.g. Like, Love: 19,554 (average: 3,259 month)

✽  Each month over 1,283 members are active.

ACCESS TO POSTS

If you are a member of the PRP Facebook Community, then simply click the Comments link to access the original post. The PRP Facebook Support Group is a CLOSED GROUP. If you are not a member, then please consider joining. Give us a 30-day test drive.

✽   If you already have a Facebook Account, search for Pityriasis Rubra Pilaris (PRP) and request to join. Or just CLICK HERE. You will be welcomed with open arms — some will be a wee bit red and flaking.

✽  If you are resistant to Social Media, find someone to be your surrogate. We have spouses, siblings, in-laws and a few “good friends” who ask questions at the behest of a PRP patient and/or caregiver.

✽  If you need — or want to be convinced to join over 1,550  PRP Facebookers, check out the PRP New Member Orientation webpage.

Here are 30 posts that may satisfy your hunger for information or just food for thought. Bon Appetit. 

 


 Topic: Energy
Deborah L — Queens, NY
“Anybody get severely winded after anything strenuous?” 21 Comments

Topic: Meds versus No Meds
EVA G — Georgia “If I don’t seek treatment and just do whatever helps me live day by day, will I get eventually get better? Will it take longer if I don’t take meds? I know it is all very individual, but i’m trying to decide what I should do. I don’t want to take meds or spend money I don’t have on doctor visits. But I do want this misery to stop. Can I just hold on and look forward to the day or do I have to take action to find a cure that will work for me?”
26 Comments

Topic: CALCULATING Coverage
Lisa L — Atlanta, Georgia So when you all refer to being 50% clear or 70% clear, etc. what does that mean? Is it that you are not red all over or 70% of your skin is totally normal? I’m still 90% red and painful…”
26 Comments

Topic: Hands
Ruth W — Kansas City, MO “My hands look like they are 100 years old. Do they ever go back to normal? My skin is slowly getting better but haven’t seen a change in my hands. I wear Aquaphor and gloves night and day.”
24 Comments

TOPIC: swimming in salt water
Deborah L — Queens, New York
“Swimming in a salt water pool? Yay or nay?”
23 Comments

TOPIC: Scalp, neck & face
Pati M — Oxford, England, UK “Can anyone help please? my scalp, neck and face are bad, I have been treating it with medicated stuff that I leave for several hours and then comb it but wonder if anybody has natural remedies that have worked.”.
21 Comments

TOPIC: CLOBETASOL®
Karen G — Palo Alto, California “My derm prescribed clobetasol for the redness and hard skin on my hands and feet. But since taking it, my feet are itching like CRAZY toward the end of the day. I’m getting more of that pimply rash on my feet as well. Have any of you had a bad reaction to this medication?”

TOPIC: COCONUT OIL
Tammy O — Clear Lake, Iowa “…Many are recommending coconut oil. Could you specify which type? Liquid or solid from grocery section,  semi solid with a gritty texture, from Health and Beauty aisles. And do you layer it with lotion? Or is this your only moisturizer?”
19 Comments

TOPIC: scalp
Monica L — West Virginia I don’t remember who said this but I have had flakes and scalp was horrible , someone said that a barber told them use listerine original one on scalp and let set for 15 minutes well let me tell u , I am one happy girl today cuz hardly any flakes from scalp.”
28 Comments

TOPIC: teeth-chattering, bone-chilling, stupidly cold
Tammy O —
“Is it normal to be cold? As in teeth-chattering, bone-chilling, stupidly cold. It’s 75 degrees outside, 70 inside, and I am currently wearing long pants, socks, a long sleeved shirt, a sweater and have a 2-layer fleece blanket around me. I thought it was because our skin is thin and new, but maybe not.”

TOPIC: Duration
Lisa L — Atlanta, Georgia
“Do we have any stats on how long it takes for the different types of PRP take to clear on average? …and maybe what meds were used?

TOPIC: Feet and Hair Loss
Rose F —Show Low, Arizona
“… I am shedding all over although the flakes are very small. But man oh man, my feet are in trouble. So much excess skin. We are trying different ointments as prescribed, but I need relief. Since I am in a PRP study, can’t use anything other than what is prescribed. What is really getting to me right now is the extreme hair loss. I had lots to begin with, so in that regard, I am lucky. But if I keep losing hair, I will have to consider wearing a wig. That possibility is depressing me. The doctor said, don’t worry, it will grow back….”

TOPIC: CBD OIL
Deborah L — Queens, New York
“Is cbd oil good for PRP?”

TOPIC: Meds versus NO MEDS
Charlotte J — Houston, Texas
“I’d like to ask if anyone has just bit the bullet and gone through this without meds using some kind of special diet or over the counter items?”

TOPIC: What causes prp?
Karen G — Palo Alto, California
“I wonder what we all have in common that made us susceptible to contracting PRP. Have any of you had mono at some point in your life? My friend has an inkling that there is a connection.”

TOPIC: Scalp Itch
Judy T — Montana
“I know I read of some things to help with your scalp but I sure cannot find them now. What do you use? Please. This itching is driving me insane”.

TOPIC: Cleaning Clothing
Lisa L — Atlanta, GA
“How do you all get clothes cleaned? I can’t seem to get anything clean or dry. Putting on damp clothes makes me even colder and more miserable. Every few hours I have to lather back up w moisturizer, put Saran Wrap over some areas and get a whole new set of clothes.”

TOPIC: PRP Prevalence
Doug F — Texas
“I was just wondering. It sure seems that PRP is on the rise. Not so uncommon anymore. Just wondering if people are finally being properly diagnosed or are there actually more people getting this disease.”

TOPIC: TALTZ
Nicole L — Ogdensburg, New York “Let’s talk Taltz. For those of you who have used it, could you please comment on A) how long you had PRP before it was prescribed, and B) the relative success, or lack thereof? (I’m reading good things, but wondering if the greatest improvements are in those who’ve had PRP for a while and maybe were headed toward remission anyway?) My husband is newly diagnosed in the acute phase and we’re desperate. I’d especially love to hear from you if you are newly diagnosed and on Taltz.
28 Comments

TOPIC: CONNECTING PRP PARENTS
Christine G — Zürich, Switzerland
“To all parents of kids with PRP: Molly needs braces like this one. Does anybody of your kids had one of these and had made bad experiences? Good ones are always welcomed!”

TOPIC: Giving Up Caffine, coffee & Chocolate
Charlotte J —Houston, TX
“Baby steps, gave up caffeine, coffee & chocolate”

TOPIC: GUIDELINES FOR EATING
Joy R — Birmingham, AL “Is there a list of foods/drinks that we cannot/should not have?”
21 Comments

TOPIC: Caregiver Poll
Tierney R — Virginia Beach,Virgina “Of our PRP patients, how many have no caregivers?’
47 Comments

TOPIC: PRP PATIENTS ON THEIR OWN
Tierney R — Virginia Beach,Virgina I’ve been wondering lately, how many members do we have that have NO caregivers to help. Maybe we can brainstorm for those people who are trying to do it on their own.”
29 Comments

TOPIC: Acitretin & Scalp itch
Vanessa R — Portugal “I’m about to start treatment with acitretin, feeling quite nervous about all the side effects. Has anyone had a good experience with this medicine? Also, my scalp has been itching like crazy, and I’ve been struggling to keep it hydrated as it is a lot more difficult than doing it on the rest of the body (with all the hair and such), does anyone know of a good emollient for the scalp?”
47 Comments

TOPIC: Remission & Reocurrence
Lisa L — Atlanta, Geargia “I’m almost afraid to ask this question but is there anyone who has cleared the disease and has not had a recurrence? Long term remission? If I can ever get past this I feel like I’ll live in fear of it happening again. Thanks again everyone for this site and all the awesome help and advice”
14 Comments

TOPIC: Diagnosing PRP
Lisa L — Atlanta, Georgia “Has anyone received conflicting doctor opinions? My biopsy results from a previous doctor came in and say psoriasis but current doctor says PRP is a clinical diagnosis and it’s “100%” PRP.

TOPIC: finger nails
Amber H — Port-au-Prince, Haiti “So I’m over three years into this, and feel blessed that much of the initial turmoil has subsided. My hands still hurt sometimes and they still shed a lot, elbows constantly shedding and feet still a bit red/shedding…. but all very tolerable in the scheme of things. Nails are a different story. Can’t get them to heal. Very discolored and sore like a loose tooth wiggling. Blessed that it’s culturally acceptable to paint my nails and cover it up, and I just normally trim them very short as to not accidentally tap them on something and cringe….”

TOPIC: GENERAL ADVICE FOR A NEWBIE
Lisa L — Atlanta, Georgia “I am new to the site and about four weeks into PRP. Was mis-diagnosed with Pityriasis Rosea, then Guttate Psoriasis, then Psoriasis Erythroderma, now PRP. I’m 90% covered, very scared and living hour by hour. … I feel terrible and basically bed bound. Trying to stay moisturized and keep my hands from cracking so I can type. Can’t sleep and starting to get hopeless. Words of wisdom, advice or encouragement welcome.”
57 Comments

TOPIC: Urea Lotion
Rose F — Show Low, Arizona “I was prescribed some urea cream for my hands and feet. I know some of you have used it. But the skin layers are so thick and it doesn’t seem to penetrate or sooth my discomfort. A friend who does not have PRP uses it for winter dry skin and cracks but I don’t think it’s very effective on abnormal over growth on my feet. Your thoughts?”
30 Comments

TOPIC: Remedies for pain & Itch
Tierney R — Virginia Beach, Virginia “What does the PRP Facebook Community do for the pain and itch of PRP?”
39 Comments