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

AFTER THE ACUTE STAGE - THE LONG HAUL

Before you read this, know that there IS lots of HOPE. One PRP'r described it as a timer going off after a few years and the body was back to normal. My transformation from what is sometimes referred to as the intense stage into the next stage (whatever they call it) happened around January 2015. Since that time I have experienced the following symptoms in order from major to minor.

1) Sore muscles, Sore Joints.

2) Very low energy (and seems to be getting worse)

3) Scalp has minor sores or bumps and is itchy. The bumps/sores usually dry up after a time, then shed skin, and start all over again.

4) Im either perspiring profusely or not at all.

5) My hair has no color.

The good news is that I look clinically fine. The shedding has been reduced to just dry skin that leaves a "dusting", and I havent taken any medication since January 2016.

By the way, if you are still on acitretin after your intense stage, I would definitely question that doctor's decision. I went off it on my own accord, and the doctor was surprised that I was "holding my own" without the acitretin. I believe his opinion is not the norm when it comes to that.

I am very interested in comparing notes on this stage of the disease from those who are currently in it, and those who are in remission. If you are one of the lucky people that had a shortened version of the disease, read this and be thankful. It’s very difficult for friends/family/work supervisors to understand why I dont feel good when I look clinically fine. Quite honestly, I feel that they dont believe it. I have learned to smile and say everything is fine when they ask the question about the status of my disease. I think I have learned to cope and ignore the exhaustion.

I am hoping for conversation on this topic - feel free to respond!

christinegnther
moderator

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

Hi, our daughter (7) has PRP since 2013. During the acute stage (the first 8-10 months) the lack of energy and the itching were huge problems but after these first difficult months her energy has come back and she is a very active and lively kid.

She was about 2 years on Acitretin but we stopped it a couple of weeks ago because our derm-team as well as we as parents were a bit concerned about the efficiency of Acitretin. So we stopped the treatment with Acitetin and will start with Stelara (biologic) as soon as Molly allows it. At the moment she is happy without medications and doesn't let herself be bothered by the heavy PRP fare up at her face and her chest.

Her mental strength impresses us very much and we would be more than thankful if we as parents would have half of it.

thanks for sharing
I am still red and flaking, peeling, cracking, etc. I also stopped taking acitretin/Soritane (in Canada), didn't seem to be changing the redness or the flaking, but was upsetting my stomach, hairloss and was very expensive.
adult PRP, now 9 mths

BillMcCue
moderator

Mary — When did you stop taking acitretin? Has your dermatologist recommended methotrexate or a biologic?

Do you use topical creams?