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barbara45034 barbara45034

On my scalp?

My doctor diagnosed PR about a week ago.  It is still spreading somewhat but I am managing it.  I have noticed that I am suddenly extremely itchy on my scalp where I've never had any sort of skin issues before. It is very itchy around the hairline and ears and also further in on my scalp.  So many sites say that PR is limited to the trunk of the body so I am just wondering if anyone else has experienced this and what I can expect.  

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  • mel73754 barbara45034

    My daughter had the same thing happen when she had PR, honestly her scalp and forehead were the worst areas.  The dermatologist said it was seborreah and could not    

    be PR but it was.  It disappeared at the same time as the rest of her spots and has never recurred.  My DD was 17 and had an atypical case, spots didn't follow the normal patterns or areas.   She used head and shoulders in the blue bottle but it was so bad I do t know if it helped.  Her forhead peeled and huge flakes were coming off of her, like mega dandruff.  Hopefully yours won't get that bad, but don't let them scare you, it CAN be PR and it will go away.  DD's lasted 4 months, they told us it was just eczema the first two, and seborreah...   Some time in the sun seemed to help her.  I hope yours clears up quickly!

    • barbara45034 mel73754

      Thanks.  I hope it does too.  In the heat of the summer, when getting overheating seems to make it worse, it is quickly becoming very annoying.  There doesn't seem to be a whole lot of information about PR out there other than the standard "don't know what causes it, no treatment for it, lasts about 6 - 8 weeks."  This forum certainly gives a lot more advice than actual PR websites.

  • stazstaz barbara45034

    Mine was neck to ankles, and scalp, and inside my mouth. The only things it did not do was face, hands and tops of feet. So, yes, it can get in your scalp. Any site that says it is confined to trunk has not done their research.

    Did you have a biopsy done?

    What you can expect: NORMALLY a spread and new "pop ups" for a few weeks. Usually lasts for 6 to 12 weeks, and is "self limiting"- leaves all by itself when it feels like it and gets around to it. It usually leaves no ill effects, once the rash part is gone, you will probably have skin discolorations that will fade into skin tone within a few weeks.

    Mine lasted 14 months. Many people report stays of 3, 5, 9 months or more. Many people report the skin discolorations lasting months instead of weeks.

    Not much is known about it and not many doctors care because it is self limiting and it won't kill you.

    Steroids do not help. Not much of anything does. There is a cream on the Internet called Prreze that is the only thing formulated specifically for PR. It is not cheap, but not that expensive either. If you can deal with the PR it will probably go away within a few weeks and just be a distant miserable memory, if you want to try something, try the Prreze.

    • barbara45034 stazstaz

      Thanks for the info.  It seemed as though it wouldn't be too bad of an outbreak, but the past few days has seen it spread like wildfire.  I have a couple of spots on my forehead, many around my ears and some on my neck and under my chin.  I did have two herald patches at the initial onset.  Cannot find any info about potentially two herald patches being a prelude to a more severe outbreak.  Or if scratching causes the rash to spread.  Very little info about this condition.  Your are correct about doctors and not caring much. One day at a time I guess.  I did get a few small "blistery" looking things by my mouth, almost like cold sores but not.  I am all too familiar with those and can say that's not what it is.  Hoping it is not PR spreading to my face.  Thanks again.

  • Monica0013 barbara45034

    It can definitely spread to the scalp. 😢 I was diagnosed 3 wks ago, and it has been one Hell of a ride. I started off with what I thought was an ugly cold/virus. I then noticed a small spot ( good ol Herald patch) on my torso. Little by little I noticed a couple of more. What really concerned me was a flaky spot on the corner of my eye. That's when he terror began to set it. Soon my entire chest was covered in this horrible, intensely itchy rash! I was prescribed a topical steroid and Benadryl. That has not helped. My face is so dry and flaky, and my neck and th sides of my face have patches as well. Just a week ago,. Noticed one area of intense itchy and flaking on my scalp like I've never seen before in my life! It's right at the front of my hairline and is getting hard to conceal. Have tried using Maximum Strength Head and Shoulders, Nizoral, and even Coconut Oil, and other essential oils. Nothing seems to be working. Today I noticed some bald areas from where my scalp peeled. I can't tolerate this much longer. Has anyone else experienced the hair loss? Does the hair grow back? I hope this clears up soon. My prayers go out to all of my fellow P.R. sufferers on this forum!

    • stazstaz Monica0013

      Yes, hair does grow back!!! Have you tried Prreze? That is what worked for me. You can (and I did) rub it into your hair, leave it on overnight, wash it out for daytime. PR is nasty!!!!

    • Monica0013 stazstaz

      I have not tried it yet. I am going to order some immediately! Does it just help with the symptoms, or does it help with elliminating it? ( Either way, I need it) Thank you so much for your reccomendation. biggrin

    • stazstaz Monica0013

      There is no cure that I have been able to find- would be nice!!! PR seems to be systemic- traveling inside your body. Prreze just takes away the rash. From what people are saying, the rash disappears within 5 days to a week. There may be a new pop up somewhere else, but if you put the cream on as soon as you see it, it will not develop any further.

    • stazstaz sazia76

      There is no known cure. Doctors have no clue of why you get it or how you get it. It is not very common, it does not have any known side effects, it only lasts 6 to 12 weeks for most people, so the medical community really does not care. The only thing on the market specifically made for PR is PrrEze. This PrrEze cream makes the rash go away within a week. I used it myself, and it worked for me.

    • sazia76 stazstaz

      Wish I could show u my sores... they r so heartbreaking!! It began in Feb 2017...and they still come back...I showed dermatologist, gone through phototherapy, antibiotics..but none works... Lately they gave a ointment named Topiclo, which works, but I'm putting it online on the visible parts, since It's tiresomely to find each and every sore... I'min so disappointed...will I hv to carry them for the rest of my life? Can I show u my sores?

    • dasia 00651 sazia76

      I was going to use head and shoulders tonight and see how it looks in the morning. But idk if you are suppose to use it 5days in a row 3days in a row or everyday once a day. Im going to try 3days in a row once a day and if it seems like it’s clearing up a little bit I’ll keep using it 

    • sazia76 dasia 00651

      U r going to bathe the whole body with it, right? Can u send me some snaps of ur sores? Just wanna hv sm ideas of the PR of others...my email id is

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • stazstaz sazia76

      WOW!!!! Mine lasted 14 months, so you have me beat!!!! Did you have a biopsy done? I don't think they let you do pics here, and the rules don't let you give contact info or links, I don't think. Cal you message me privately? Just click on the stazstaz, and it will take you to my profile, and there is a message center there.

      The reason I am asking about biopsy is because one of my biggest pet peeves is that dermatologists and doctors at large do not do biopsies, they just decide they know what is wrong with you... They usually say things like: "oh, use this prescription, and if it doesn't resolve in a couple of months come back..." That prescription is usually for a cortisone- steroid cream, which does nothing. They say a couple of months because most rashes are gone by then. Your topiclo is one of those steroid creams. Read the side effects they can be nasty!!!

      If you rash pops up again and again, over a period of 14 months or so, it can be one of several other rashes that look similar to PR. Contact dermatitis, ringworm (fungal infection like athlete's foot), lichen planus, granuloma annulare, and guttate psoriasis. With a biopsy- just a simple scrape biopsy, not a core one- they can tell you for sure what you have, and you DESERVE to know what is wrong.

    • stazstaz dasia 00651

      Prreze twice a day- they have the directions on the places they sell it. Morning and evening. I put it on after my shower, with one shower a day. It smoothed on easily, like suntan lotion. It put it on like lotion, and it sucked in to my skin. Showering before you put it on gives it a chance to work before you take your next shower. I guess you could shower twice a day, as long as you put the cream on after.

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