From the Editor
The PRP Survival Guide is designed to be 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. Only we are best positioned to harvest that knowledge.
Share what you have learned about PRP and your legs. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.
How has PRP affected your legs?
Tania T (Clausthal, Germany)
Legs were a big issue for my husband, Julian. He suffered from painful swelling which, in turn, affected his mobility. He was hospitalized for three weeks. The dermatologist and nurses at the hospital helped me to learn how to deal with the swelling.
Support sockings were the easiest way forward. These were tailor made to fit each leg. With legs raised on a firm pillow so the blood flow was sent back to the heart, it helped reduced the swelling. However, the nurses there were keen on using the old fashioned way. Creamed/greased up the leg then bandage from foot all the way up past the knee. Fairly tight but without stopping the flow more. Almost mummified! This helped not only with warmth so the cream absorded into the skin but with blood flow too.
Many others have said laying on their backs with legs up against the wall, has helped.
Julian had DVT prior to the onset of PRP as he was a frequent flier due to his job, this of course worried us when his legs started to swell with the PRP. Support or compression socks are always worn when travelling or in any static situation, this of course continues post PRP. I am glad you mentioned travelling as others that may have had DVT, can see others that have suffered in the past can get through PRP.
Bill M (Plano, TX)
I was prescribed compression socks on my very first clinic visit at UT Southwestern in December 2012. I have been in remission (no symptoms, no meds) since April 2014 and still take furosemide (a diuretic), wear those socks. In 2015 my dermatologist diagnosed a blood clot in my right leg. The DVT (Deep Vein Thrombosis ran from my ankle to behind my knee. I was prescribed Warg=farin. A year later s blood clot was located in my left leg. Now I am on Xarelto®.
