From the Editor
The PRP Survival Guide is a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. We need to harvest that knowledge for those in need of enlightenment.
Share what you have learned about PRP as a patient or caregiver. Share what you have been told by your dermatologist. Share articles you feel might be worth reading or websites worth visiting. Whenever you have information to share, please send your “sharings” via email to editor@prpSurvivalGuide.org.
The following conversation about SUNLIGHT began on January 18, 2017. The unedited version is available to members of the PRP Facebook Support Group.
Has anyone had any experience being in the sun when you have PRP?
Tania T — Harz, Germany
My hubby covered up in the sun, light coloured and light to wear clothing. High factor on face and neck, and wore a hat. He found if he didnt do this he just turned redder and redder within minutes. Pre prp he was a sun worshipper and had a lovely bronze skin tone when out in the sun.
Traci W — Seymour, Indiana
I burn through clothes (sweats due to the “chill” of PRP), under an umbrella with SPF 100 on. Extremely sensitive. I also by the lisa sunblock.
Jean N —Boston, Massachusetts
Before I knew I had PRP, they thought it was eczema for over ten years, the last two or three years if I went in the sun it wasn’t good. My skin would turn red and ashy within a short period of time. I avoid the sun now.
Steven B — Jervis Bay, NSW, Australia
Don’t do it
Karen B — North Wales, United Kingdom
Can’t tolerate the sun. Need shade, need sunblock factor fifty. I buy the type marketed for children ( fewer nasty chemicals! )
Nicola G — Central Otago, New Zealand
I stay out of the sun and cover up. The sun used to really hurt, even just the heat from the sun on covered skin hurt when I was bad. I’ve had a type of skin cancer removed a few years back ( New Zealand has one of the highest rates of skin cancer in the world), the sun is not my friend 🙁
Jeannine E — Clearwater, Florida
I used to be out in the sun all day, every day… Before prp.
Now I have to take vitamin D supplements. I can’t even spend much time on the beach and I live like four miles from it. Hopefully someday I will be able to tolerate the sun.
Trine T — Aarhus, Denmark
I Think it depends on your skin type in on which state you are in as PRP. I used to wear sunfactor 50 and that works for me.and that is even though I am very light skin. I never directly Lie in the Sun but I can do activities with my sunscreen on I can though feel very burned and very warm in my skin but are use a lot of after sun lotion and aloe vera gel. Works for me hopefully it will work for you as well as a person living with PRP I find high life quality in being outside and it really is very important for me and the mood I’m in
Tania T — Harz, Germany
Oh on the flip side to what i said earlier, i do think its important to get sunlight, imho it helps with moods and stress levels…..so, if you are like me and my husband we do as i said in my earlier post or sit in a well shaded area with lots of fluid! (Mines a beer, his is a kids beer or water lol)
Linda B — Oswestry, Shropshire, England
I am heat and light intolerant thanks to PRP. So when it’s hot in the UK, I avoid the sun as much as possible and hang out in the shade/shadows!
Deborah B —Kannapolis, North Carolina
During the acute stage I kept covered with UVB protective clothes and hat while outside, which wasn’t often I was so weak. Now, I wear a nylon sauna suit to stay moisturizers so I don’t get a lot of sun. When I roll sleeves and pant legs up to get sun, I have no negative reaction. The problem is overheating because I don’t sweat.
Traci W — Seymour, Indiana
I would feel the sting of burning within minutes. I am hoping that this summer is better. I love sitting out by a fire, but had to wait until the sun went down.
Mary L — Yarker, Ontario, Canada
I couldnt be when full red head to toe….hurt, upset stomach, had to totally cover but felt the sun like a laser….also i wore 4 layers of clothing…..1 day I thought, i can do this and started almost hyperventilating
Marianne B — San Diego, California
Can’t stand it. Highly sensitive to the sun
Diego T — Barcelona, Spain
I have juvenile onset, 34 years with PRP. For me sun is good, alway being carefully, with sunscreen maximum protection since I am on acitretin.
Every type is different, but my doctor always says uvb ray are good.
Darrell B — California
I always wore long sleeves because mine would get worse probably because of the meds Acitretin
Frazer B — Brodick, Scotland, United Kingdom
Sun is my saviour. Clears me up then back to Scotland after lanzarote for a fortnight and it’s back.
Christine G — Zürich, Switzerland
For Molly, juvenile onset, there is nothing better than sunlight. She starts clearing in days! She is very light skinned and always puts sunscreen factor 50+ on.
Mary H — Novato, California
My husband – intolerable!