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 something to share, please use “Leave a Reply”.
The following conversation (post and comments) was started on December 6, 2016. The original unedited exchange is available to members of the PRP Facebook Support Group.”Ž
Correen P – Toronto, Ontario, Canada
I live in Toronto , it’s winter here yuk, lol I am suppose to fly to Orlando on Monday for a week , I have not been in the heat or humid climate since my PRP diagnosis in sept , I don’t plan on laying in the sun but can anyone share advice on how to deal wiRh a warm humid climate wiRh PRP. ? My ankles and legs are swelling here in the cold weather ! I assume I shd drink more than usual ? I’m nervous travelling into a warmer climate. Any advice please?
Karen A – Sarasota, FL
I’m from Sarasota. Right now it’s not really that hot or humid. Most of my clothes are loose and I pretty much have to hide my arms and legs from being so inflamed. You will be fine. Enjoy your stay! With the determination and excitement of your show it will be a nice distraction jus bring all your special lotions and potions.
Tierney R – Virginia Beach, VA
I’m assuming you’re elevating your legs above your heart a lot of the time. You’ll have to do that in Florida too.
Missy E – Denton, NC
Be careful & be aware that you may no longer sweat while you have PRP. Keep cool wet cloths on the back of your neck…helps a lot!
Lorna R – Eugene, OR
Actually, the warm humid climate is going to feel a lot better. You should have no problems, and you might want to stay there!!
Correen P – Toronto, Ontario, Canada
I’m worried about the swelling in the heat and if it will be worse
Brenda M – Kent, England, UK
Try compression socks they really help keep oedema at bay. Pull them on before you get up in the morning.
Correen P
Thanks Brenda. I have a couple pairs the problem is my soles on my feet become so dry within hours I split open with fissures so I’m trying to figure out something as I know I can’t take these on and off and on and off n they r handwash only
Brenda M
I have toe less ones and it’s easier to fold them up from the foot to give access to cream etc… They do get mucky with the cream,I only need it on one leg so have 2 pairs so 4 is enough to rotate.
Murray R – British Columbia, Canada
For the edema, make sure to elevate your feet above your heart. A recliner with a pillow or two on it works for me. And also, my derm suggested to stand on your tip toes and then go up and down. Pump action for your lower extremities.
Correen P
Great advice thank u
Misti B – Vacaville, CA
Being in a warmer moister climate was good for me. I kept covered so I didn’t expose my skin directly to the sun, and bought some uv protective clothing.
Peter A – Spring Hill, Queensland, Australia
Hi Correen. This is my personal experience. I live in Brisbane, Australia where it is humid. Ive had PRP for four years. I find the humidity better than a cold dry environment, where the radiators for heating really dry out my skin. Just drink plenty of water and hopefully you do perspire to moisten your skin.
Correen P
Hi Pete. Thank you I’ve heard a few people mention the same regarding moist humid weather vs cold. Here , I get so so dry al pat hourly on my feet n hands if not in my nitrate, gloves , and the sweeping can get bad, that’s what I am worried about too …how much worse will the edema get? Or will it maybe get better ??..
Sandi H
My husband found UV protective shirts were key for surviving the heat and sun. We ordered online thru Amazon. Fairly reasonable prices.
Tania T – Harz, Germany
All great advice! Lots of water, elevate legs when you can and cream at any opportunity!
Correen P
I don’t know if I mentioned this but I am not red head to toe , my issues are more so lesions on shins and feet r very bad and hands and scalp , the rest of my Body has been and is clear ? It’s a mystery to me
Murray R – British Columbia, Canada
That is weird, but so is this damn disorder the way it is different for different folks in so many ways ! We are all walking in the same direction but the damn disorder keeps putting up different detours to the road of success.
Kendra H – Stockton, CA
Humidity feels good . Warm is good. Heat and humidity can be hard for us to handle. How is it inside the arena? Air conditioning is cold and dry.
Carol L – Jacksonville, FL
Correen – I live in Florida and am covered about 80% . I think you will experience relief and not want to leave ! I travel to colder climates and layer so I don’t freeze. Still layer lightly, drink lots of water and moisturize like usual. You will be fine !
Mary H – Novato, CA
Take a parasol and be prepared to stay out of the hot sun. But, better than freezing!
