PRP Alliance

PRP Alliance

What Works — Skin Hydration Treatment

From the Editor

One of the many frustrating aspects associated with pityriasis rubra pilaris is reflected in the following mantra:

What works for one doesn’t work for all.

Over the past few years, however, I have taken the opportunity its to amend the Treatment Mantra to reflect a more positive reality:

What works for one doesn’t work for all,
but if it works for ONE,
then there is hope for YOU.”

When a PRP patient or the parent of a PRP child  has a question about the efficacy of specific medication or treatment, they have ONE option: to post their question to the 2,200-plus members of the PRP Facebook Support Group and hope for lots of comments. Comments from the Land of Chat are generally forthcoming.

Moreover, the odds are pretty good that a comparable question has been asked many times before by others. Unfortunately the responses to those earlier, medication-specific posts have never been retained by Facebook in a manner that supports retrieval at a later date. In other words, the many insights and shared experiences regarding  a specific medication or treatment shared by other PRP Facebookers over an extended period of time are not easily retrieved.

It’s time to build a better mousetrap. WHAT WORKS is that new mousetrap.

Your insights and observations will make it easier for other PRP patients and caregivers to learn more about specific medications.

While the focus is on WHAT WORKS, experiences that are less positive should also be shared. Please use “Leave a Reply” to share your insights.

1 thought on “What Works — Skin Hydration Treatment”

  1. Edward Castle, Jr.

    Edward Castle Jr.
    November 6 at 4:29 PM
    Original Post for Members Only: ·

    After going undiagnosed for a year and having just about every symptom in the book, I was finally diagnosed at the Mayo Clinic in Jacksonville with PRP. When I got there I was admitted more for a kidney stone and being septic. They found two blood infections and two skin infections also. While being treated for all of that, the dermatology department had me start some skin hydration treatments that I wanted to share with everyone. i’m sure getting all the infections cleared up and my kidneys functions improving helped this treatment work but I’m also hoping it will help you too. I have modified it for home use.

    I use three products. VanniCream ointment, Desoximetasone ointment 2.5 % and VanniCream lotion. Please note that the dexamethasone was prescribed and I would definitely check with my dermatologist before I would arbitrarily use it. I also bought 30×30 chucks on Amazon. They are also known as wet pads. They are a quantity of 50 for $35. Well worth it. I also used distilled water a gallon at a time at room temperature so that I don’t shock my system by it being too cold or too hot. This way the temperature stays the same on the chuck for the whole treatment.

    I pour my water in my container and unfold the chuck and wet it. I wring it out to where it is the consistency of clothes leaving a washing machine. I take the first three and line the bottom of my tub wet side up. I also wet three additional chucks to put over the top of my body and have them on the side until I’m ready to get in the tub. I coat my face, armpits and groin with the VanniCream ointment. I then coat the rest of my body with the Desoximetasone.

    I carefully get in the tub because the chucks are wet and I’m slippery from the ointments. I lay in the tub and take the three extra wet chucks and cover my body tightly. Kind of want to look like a mummy when you’re done. I do have a heater on low just to keep from getting cold.
    I sit for one hour in the tub and I cannot explain why but I end up getting super hydrated.

    When my hour is up, I carefully get out of the tub and pat myself dry.
    Then I liberally apply Vanni cream lotion all over my body and get dressed.
    I may have had exceptional results, but my flaking skin started to improve within two days on my body and about six days on my face. I have very little flaking skin now so I’m not as itchy and I am not cold anymore either.

    I use this technique twice a day. If your tub is not big enough you could use a shower curtain liner on your bed to keep your linens and all from getting wet.
    Please just remember to be careful when moving around because you’re wet and slippery and I would definitely talk to my dermatologist before I use this technique to make sure you’re on the right steroid cream for you.

    I have included some pictures that I hope makes sense with the description I’ve given you. As we all know, the cures and remedies of this disease is different for everyone. I wish you all the best of luck and I do appreciate being part of this group and everyone sharing so freely.

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