Pityriasis Rubra Pilaris (PRP) Community

Meet, discuss & support other patients or families living with Pityriasis Rubra Pilaris (PRP). Contribute to topics, or just share what's on your mind

Parents with toddlers with PRP

I would love to hear from parents of toddlers with PRP - how long the children have had it? Any signs of remission? Any advice?

christinegnther
moderator

Hi, Molly's PRP started when she was 4. She is now nearly seven and PRP is still active. I know it is not what you have preferred to hear but I can tell you that the first few months are the worst (let's call it hell and nightmare!) - then slowly it gets better. At the moment "only" her face and scalp are involved and she has two rashes at her neck.
She is on Acitretin but her dermatologist is not very happy with all the little flare ups she has every couple of months. So it is planed that we finish Acitrein in a couple of weeks and look what happen.
Additional to the treatment with Acitrein she has light therapy. The light therapy helps her skin a lot and she has no problems to play outside in the sunshine. We are very happy about that.
What had helped her a lot in the beginning of PRP was a bath with olive oil. I added two cups of olive oil (the one you use for cooking) to her bath water (sometimes I poured it directly over her skin - she was "slimy like a fish" and loved that - lots of giggling during a very difficult time).
It is a demanding time with lots of fears, tears and pain - but please never forget - you all will survive that and there will be easier times.

I am wishing our little one a very speedy recovery!

Thanks for the in-depth reply, Christine. The good news on our end is that at this point, my son doesn't really know any better/different and it's really worse on all of the adults in his life vs. him. Because he's so young and has no 'negative' side effects vs. rash & peeling, our doctors are hesitant to try anything more than topical steroids at this point, which we've actually stopped after the first month as they had no affect. We just go through tons of vaseline to keep him moisturized but that's about it... Yes, here's hoping a speedy recovery to all!

christinegnther
moderator

We have made the same experience with topical steroids. No effect.

We have used tons of Vaseline! Is our best friend now. We never leave the house without it.

It is amazing how strong our little ones are!

I've had PRP most of my life, and I wished my parents had thought to use Vaseline after baths. When I was younger (13-14 yrs) my derm had me on a compound of Aquaphor and Lidex which worked okay. Eventually I just switched to simple Vaseline (which I still use). When my most recent flare up was really bad, I used Cetaphil right after showering, waited about 5 min, then applied the Vaseline. Cetaphil is a super moisturizer that is odorless and didn't cause me any irritation, unlike many over the counter lotions/creams. If my skin were cracked or especially dry, most of the other 'moisturizers' would cause a burning sensation or not last more than 30-60 minutes. Cetaphil often felt like dousing a fire, and brought immediate relief if I required maintenance between showers.

This Cetaphil/Vaseline (usually generic brand for half the price) combination seemed to produce the best results for the longest period of time, typically 6-8 hours (now all day) before having to do some upkeep. You might also consider coconut oil or shae butter instead of olive oil. You can easily work it into the scalp and wash it out without leaving as much of an oily residue in the hair; previously I'd used baby/mineral oil every few days to reduce the scaling.

I often mixed Cetaphil/Vaseline into a small Vaseline container and kept that in my pocket for light maintenance if I was out or at work. I just go to the bathroom and wet the area, usually my face/neck or arms/hands, and then apply this compound.

Cetaphil is usually around $10 (US) for 16 oz. in most big stores (Target, Walmart, etc.) but considerably more at pharmacy chains (avoid those). You can get a 20 oz tub for $10 at Sam's Club. I would typically go through 1 tub a week when my flare up was at its peak, but I used it pretty sparingly. Now I keep a jar at work, just in case, but rarely need it and have had it a couple of months.

Thank you! It seems Coconut Oil seems to be a favorite natural remedy I hear about often...

My son has it since he was 6 months old. He is now 2 years, and there is no sign of remission, 95% of his body is covered in lesion. He is probably in the type V/atypical juvenile PRP.

We started with acitretin since two days ago, after many topical treatment have been tried with no results. Hopefully it will work for him.

For daily moisturizer, we use vaseline paraffine zalf, mixed with lighter cream such as dexeryl or decubal. We use coconut oil for his scalp. We do bath every other day with dead sea salt, followed by vaseline paraffine application.

christinegnther
moderator

Role: Caregiver
Onset age: 4
Onset date: 08/2013
Diagnosis date: 10/2016
Type: juvenile onset
Status: Active

Hi to all, a couple of weeks has gone and I would like to know if there was/is a change in the treatments of your children?
Like you might know we have stopped the treatment with Acitretin because we and our derm-team had the impression that it didn't work anymore for Molly. Now we are discussing Stelara and observing what happens while Molly is med free. Not an easy task for us parents especially when we see that she as a bad flare up at her face and that also her chest starts to react. But Molly is happy and active as usual and doesn't let herself be bothered by her PRP skin. She refuses to start with Stelara so we wait until she is ready for it or PRP stops - what would be like paradise!