PRP Survival Guide


Issues related to relapses and setbacks

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.

The following conversation about RELAPSES was started on March 31, 2016. The unedited version is available to members of the PRP Facebook Support Group.

‎Linda D — Enterprise, AL

I know this is a support group to help give tips and help those who are going through this horrible PRP journey, but …

✽ Does anyone know what is out there for those who have recovered?

✽ Does this truly every end for those of us with adult PRP?

✽ What changes, if any, are for “life” or do we go back to a truly “regular” or “normal” life?

I am approaching 2 years with PRP, I consider myself “better” but anything is better than those first 6 months. Point is, I read about relapses after years of remission, (yet derms and google says “rarely does it come back”).

I was told by a derm that some studies show PRP might be due to un-diagnosed cancer, another derm said no, “cancers may be linked to treatment medication but not PRP”, derms say everyone is different, they are just throwing a dart to find out what works for each individual..we are all different..did you know that? Nothing is “consistent”, except perhaps my head…which is spinning. Is there a group or anything with studies or history on what life is like AFTER PRP?

I post this not to scare those who are beginning their journey, we all have gone through the ringer, but I have not found anything on the “after” PRP journey and derms are not helpful, perhaps out of fear of being sued. I want to know, will I ever get to just put on a bit of moisturizer and dress without ruining my cloths, go outside, will my feet ever stop burning, will my palms and feet stay normal looking or continue to go from normal to being beet red, all within, you know the next 30 seconds, will I ever get to use regular shampoos, wear make up, use regular soaps, or is this a for a life time adjustment? Comments, but, be kind..did I mention my head is already spinning?

Jeannine E — Clearwater, FL

I would recommend you stick with what works. I was clear for months, then I got careless, and boom! Covered again!

Bill M — Plano, TX

The PRP Community Database has 279 PRPers who have indicated their status is REMISSION and perhaps another 300 who are probably in remission.

I have been in remission since April 8, 2014. I have learned that remission is not the end of our journey. Jeannine, for example, just wrote: “I got careless and boom!” Some went boom without getting careless. Some have “remnants”. Others have been symptom-free for decades.

We really should survey EVERY PRPer who is in remission and ask them …

(1) Onset Date? (2) Onset Age? (3) Diagnosis Date? (4) Remission Date? (5) Did you experience relapses and/or setbacks while in remission? How many? How extensive? How long did each last? (6) What were the actual or suspected triggers?

Karen A — Sarasota, FL Well said Linda! I too feel the same. And Bill Yes the more we can contribute and document. Wow!

Luciana C — Sao Luis, Brazil

Anyone here was born with PRP and never had remission? I never had these flares like you. My skin has always been the same, except when I’m On meds. It’s dry and rough, but it doesn’t hurt or itch.

Lise D — Denmark

I feel almost like you got it when I was 4 months. The skin is red and scaly with little itching. But from November to January is not so red and scaly. But in pollen seasons skin becomes more red and irritated. I am multi allergic to pollen from trees, grass sagebrush cereal etc. I wonder if this may affect the inflammation in the skin. Has anyone noticed something similar ?? In this group are shown not as many as us who have had PRP as a baby, but most outbreaks as an adult. And they may have good means of each other.

Diego T — Barcelona, Spain

I never had a remission, I was 8 when I got it.

Francisco Q — Tucson, AZ

Wonderful questions and answers. We need to hear from people that already healed to make our hope stronger. Let’s keep our faith in God for those that believe in him. Thanks.

Holly B — Boerne, TX

My husband has been in remission for 5 years now! He has not had any setbacks and is basically back to where he was before PRP, other than he still does not sweat. He doesn’t do anything to protect his skin when in the sun, which he should! If you looked at him and saw his PRP pictures, you would never know they were the same person. Our dermatologist told us, when you get late onset (in his 50’s), you rarely have a reoccurrence once remission is reached. All I can say, so far, so good.

Susan R — Columbus, OH

I does goes away. I started with PRP in June of 2011. I was one of the lucky ones for which methotrexate worked wonders. By February of 2012 mine was completely gone, and I haven’t given it a second thought since.

Karen G — Scunthorpe, North Lincolnshire, England

Mine was a year, but it’s been five years symptom free now. It was scary to start with because of all the things you hear, every spot, rash or itch I thought it had come back. Now I just think enjoy not having it and if it does come back I will deal with it as I had before. Good luck and try to enjoy any little improvement, it sounds like it’s going the right way x

Deborah B — Kannapolis, NC

I have been wondering the same thing this last week! May 2016 marks two years with PRP for me. Will my skin, and the other symptoms particular to me, be normal again, ever, this side of heaven? I thank God I can still get up and do things- it could be worse and He spared me that- and yet I still wonder if remission and normalcy is for me again. Thanks for posting this, and thanks for those who answered!

The following conversation about RELAPSES was started on November 11, 2016. The unedited version is available to members of the PRP Facebook Support Group.

Annette P — Natick, MA

Has anyone experienced a relapse after stopping Acetretin and being clear for a month? My husband stopped Acetretin after 7 months. His skin was back to normal and he felt well. He only had pain in his fingers and feet but no spots anywhere. But now after 6 weeks of no drugs and clear skin he has a few spots appearing on his back. He was diagnosed with PRP in February ’16 but we feel he has had it since fall 2014 but was only diagnosed with it this February. Any comments or advice would be much appreciated. Thanks!

Nicola G — Central Otago, New Zealand

The medication I take, takes care of the symptoms, doesn’t cure. The times I’ve tried to drop my dose, it’s to see what my prp is “doing”. With my meds at the moment, you wouldn’t know by looking at me that I had PRP, last times I went down a little in dose, started to flare. Hopefully one of these days I will be able to drop the meds completely and not have PRP. I am type Two and taking methotrexate, so different as we all are. But I think it’s the same thing, the meds only help with the symptoms, there is no cure. I wish you and your husband best wishes, hang in there x

David O — Worthing, West Sussex, England, UK

I have a similar dilemma. I got PRP at the beginning of February. Diagnosed at the start of March and started Acitretin then at 35mg per day. Been on 25mg per day since the beginning of July. PRP started to clear at the end of September. I’m now nearly clear and wanted to stop the Acitretin. So was looking to wean myself off over a couple of months. So any advice will be gratefully received. What dose was your husband on?

Sean L — The Woodlands, TX

For me the side effects of acitretin were worse than the condition but everyone’s tolerance for things is different. I started at 25 mg and went to 50 mg and was on 50 mg for 3 months by that point I had lost all of the hair on my body except my head even my eyelashes. My skin burned constantly and I was just done with that med. I stopped it over the course of a month and took it for 6 months total. My doctor said that it could be stopped cold but I was afraid to do that. I still have PRP but it is getting better I am 99 per cent clear today and have 2 very tiny spots on my skin and a few spots on my scalp. I truly feel at a minimum it takes several years for Type 1 to run its course. Some are more fortunate than others. I was only in an acute state for a little over s year. I still have flares but mine is not so noticeable from my skin, for me I get extremely fatigued and things happen like my eyes hurt and I itch for a day or two. PRP is definitely an odd and strange disease. Once you’ve had it you always think it’s lurking in your system to come back with a vengeance. But hopefully it never does.

Annette P — Natick, MA

Sorry it took me so long to reply. Tony, my husband was on 25mg Acitretin for 7 months. He weaned off over 4 weeks. He was totally clear for a few weeks and just this last week has some spots on his back and legs. I know he is scared that it will flare again. We think he has had prp for about 2 years and we were hoping that it was at an end. How long has PRP lasted for any of you with adult onset? And how long has skin been clear before you are PRP free?

Bill M — Plano, TX

I took acitretin for nearly 12 months. Went from 25mg per day to 50mg back to 25mg. Weaned off at 25mg every other day for 45 days. My dermatologist agreed with my plan. Declared in remission on 04/08/2014. Symptom-free since 02/2012

David O — Worthing, West Sussex, England, UK

Thanks Bill. I’m at a point where I’m not sure what’s worse the PRP or the dry skin and lips from the Acitretin. I also was under the impression that once your skin started clearing that was it and the Acitretin only dictated how long it takes to clear.

Annette P — Natick, MA

Bill, what is the difference between being sympton free and in remission?

Bill M — Plano, TX

IMHO there is no standard definition of remission for PRP among dermatologists.

There are PRP patients who say they are in remission even though they are still taking drugs like methotrexate. That may be a valid definition.

And there are some who say they are in remission but lament that their scalps are inflamed. That may be a valid definition, too.

And what about those who get back to their pre-onset state but seem to have regained only 80% of their energy and notice muscle loss. I call that “remission with remnants”

And there are some of us who say we are in remission with occasional relapses.

Again, there is no “official” definition. For me I like “symptom free with no medication”. If I relapse I would consider myself to be “active” until I am once again “symptom free with no medication.” Just my opinion based on my personal experience.

Traci W — Seymour, IN

I am sorry to hear. I broke out in March of this year and was diagnosed in April. I have had limited improvement since that time. I don’t know the answer to your question, but wanted you to know that I am saying my prayers for you and your husband.

Lorna R — Eugene, OR

A few spots? Hang in there. Maybe that is all he will get.