Topic: Remission (Endgame)

Posted by Ron A — East Sussex , England (12/28/2017)

Let’s talk about remission. How long does it take?

Christine G— Zürich, Switzerland

Sorry, I am the first one who respond to your post and I am the one who will probably bring the not so good news. Juvenile onset is some kind of unpredictable. They told us Molly will be in remission after one year – we are in our fifth year now. Some go into remission for a couple of years and then out of nowhere have a relapse and PRP is back. As a mum of a child with PRP I am hoping for long “passiv” phases without signs of PRP. A lifelong remission would positively surprise me.

Tierney R — Virginia Beach, Virginia

I agree with Christine. I am a juvenile onset case myself and have seen several remissions and I am now 58 years old. My longest remission was about 10 years long, my shortest was my last one at approximately 6 months.

Diego T — Barcelona, Spain

I agree with you two, I am a juvenile onset case as well, started when I was 8, no remission at all. Sometimes I was fine, just hands and feet, but I’ve never been all clear.

Roh A— Easy Sussex, England

Why do they tell patients it will go into remission within the year?

Ginny M— Lexington, South Carolina

Because Adult onset is more common and the adult onset do go into remission. I was born with PRP. My 3 kids have prp too. I have been told several times that they think we may have something else since is it uncommon to pass it on. Regardless of what the real diagnosis is …. It will be treated the same as most skin disorders.
I would start with light therapy. My kids and I take Stelara and have for years . My kids are totally clear but their hands are still dry. Jamie Eliason daughter takes it too and has gone off to college and lives a pretty normal like like we do. She started taking Stelara in high school. I tagged her because I think her daughter would be closer in age of your son . My sons will be 13 in a few weeks . Onset comes for all of us at different times . Nathan broke out at 4 weeks old. Joey was closer to a year old.

Jamie E — Kalispell, Montana

My daughter Delanie, age 19, has had great success with Stelara . While other meds were not successful , Stelara has given her a normal life. While i don’t believe she is in remission, I have hopes that someday she will be. Today, after being on Stelara for 3 years, she occasionally gets dry patches on her face and elbows. I believe this is due to stress and cold montana weather. The summer sunshine seems to help.

Martin W— Wolverhampton, England

Adult onset type 1 should resolve within three years or so. I’m seventeen months in and am around three quarters clear but the last part is taking a long time. During the acute stage it was absolutely horrendous and I ended up in hospital

Emily V— Cheltenham, England

Max has type 1/type 3. He has had PRP now for just over 10 years. We have had no sign of remission though we are under control

Anita R — Pearl, Mississippi

Took me 18 months

Kendra H— Stockton, California

Started improving by the end of the first year. Its been two years now. 

Lise D— Syddanmark, Denmark

Ho ho I think I hit the record! Have had PRP for 68 years

Mickie C — Burlington, North Carolina

Hi, sorry for the late post I became a PRP’er in 2014 . Very long process cleared up in 2016. I get a few spots every now and then. Santa left me one for Christmas smh. I wish you all the best my friend TRUST ME I know how you feel.

Sean L — The Woodlands, Texas

So PRP is one of those conditions that although you may look back to normal to everyone else you personally know that you have it and have been through it, mine started in May 2015 and I was in the acute phase for about 9 months before I began to see any real improvement, after that improvement was rapid through 2016 and life mostly returned to normal, but there were still signs, face was still blotchy and scalp was itchy but gradual improvements still. Went through the entirety of 2017 mostly the same an then in December, I have noticed my skin still looking better and less red and blotchy and the spots on my scalp that itch continuing to get less and less. I truly feel that in 2018 I will all but forget that I ever had PRP. The medical consensus is that Type I Adult onset takes between 3-5 years to completely resolve, I have found this to be the case. May 2018 will be 3 years for me and I think at that point I will be mostly over PRP, at least for now. Everyone is different and the future is unknown. I hope you see improvement in 2018. Happy New Year.

Elaine C — Selby, York, England

My hubby started with prp in November 2016.by September/October 2017 he was loads better just has the occasional itch now