Is PR rare

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My derm and on-line research says PR is “common” and “trivial.  (Trivial?  Good grief.)  Noticed starzstarz said it was rare.   I had never heard of it before 4 weeks ago when contracted.  Derm said it will go away eventually.  My herald patch and spots are starting to fade or be less red and angry, some spreading out a bit and some getting scaley in middle.  Is it common after a little under four weeks from first seeing herald patch to three weeks of massive eruptions to now starting to fade under four weeks?  They are starting to feel less bumpy and my skin is starting to feel more smooth as normal.  Not going away completely, still there for sure, just beginning to fade to lighter.  Is this normal just under four weeks from onset AND is PR common or more on the rare side?  

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  • Posted

    Hi mert, stay in there!  you are not alone with this terrible affliction.  Stazstaz was talking about the fact of two of us having ulcerated mouth - along with Piryriasis Rosea.  Plus losing the taste buds so food was not only hard to eat, but there was just NO taste!  She said it only happens in 'one-in-a-million cases each year.  So be pleased you are not one of the unlucky ones.  I'm also told prreeze (cream) helps get rid of the rash/spots...in time.  According to my doctor (and the many answers to my original question about the affliction  Pityriasis Rosea is quite common, and doctors do nothing to treat it!  With my very sore mouth I was told to use a mouthwash!!!!!  Which did not help much.  I got my PR way back at the end of June (or it might have been even before that, but I did not check the lower half of my body which had become infected with a rash/ spots)  It was only because I'd hurt myself and was checking for bruising that I noticed the very heavy markings on my upper thighs and it all started taking off from there!  So as I said.  Keep calm and keep using the cream/body-wash etc, but like me try not to give up hope.  Although my taste buds are still absent and my rash/spots are going - slowly, I'm hoping...fingers crossed that as stazstaz said of her own experience..."the rash went and took away the mouth ulcers too."

    ?Is PityriasisRosea common?  Definitely NO - I've seen so many others suffering, but not on the scale of an epidemic.  Just us few 'rare' animals I guess.       

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    • Posted

      Thank you, Rosy Posy, for your response.  So, I guess "common" is a relative term.  You and stazstaz both say it isn't really that common.  Odd how dermatologist and Google articles say it is.  Regardless, we have it.  We're all trying to manage just getting on the other side of this with figuring out the in between.  I'm so sorry that you are dealing with the mouth ulcers.  Good heavens.  That sounds incredibly sore.  Ugh!!

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  • Posted

    It is on the short side. I am amused at your derm. I agree with you that for those who have it it is not trivial at all. Wish all the derms had it before they were allowed to call it trivial. Derm was right that it will go away eventually. It is just the part between getting it and the eventually that is a bear!

    It sounds like you had a very mild outbreak. Most people get a patch, it erupts into rings, starts fading,and another patch appears elsewhere, usually 3 or 4 outbreaks on different parts of your body before it gives up and finally goes away.

    Hope this is it for you!!!!!

    The statistics are that about a million people a year worldwide are diagnosed. That makes it pretty rare.

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    • Posted

      Thank you stazstaz for your response.  Agree with you, any derm/physician should have to go through this before categorizing as common or trivial.  I think that's physician speak for....we have found that it will go away eventually and try not to worry that you'll be dealing with this forever.  Suppose that could be true of any disease (cancer, mental illness, etc.)  If everyone had to experience what others suffer, perhaps it would help us to understand (and treat) things better.  In my 52 years of life, I've observed that until something effects someone personally, it typically doesn't get your attention.  Sounds like some on this site are really having a rough go of it with getting rid of PR.  And, your mouth ulcers add an extra layer of frustration and annoyance.  Heavens.  As I said to Rosy Posy, that sounds painful!  Feel for you both.  I thought my experience was bad.

      As far as my stating that some of the spots were fading...    I gather that a little under a month isn't typical for spots and herald patch to start fading.  Which, has me a bit concerned that the outbreaks elsewhere that you mention are waiting in the lurch.  In fact, I noticed this morning after showering (which showering makes the spots look angry red again and bigger, but then turn less angry in a little while), that my arms now appear to be possibly getting hit more with the dreaded spread.  Sounds like you nailed it when you said that when it starts to fade in one area, it can take up residence elsewhere.  My arms (so far!) are nothing like my neck, back, ribs, abdomen.  I'm completely covered in those areas.  I did have outbreaks under my arms, but now it seems to be spreading more to front and under side of forearms.  My legs, bottom and groin are not (so far!) hugely effected.  Although, apparently, they could get hit worse eventually.  Just have to wait it out/tough it out.  I'm grateful that it isn't on my face.  I hate to be vain, but at least in winter now I can wear a turtle neck and cover up. 

      Now, here's another oddity (?) I have experienced that I have not read about in my PR research or saw it mentioned on this site, unless I missed it, which is possible.  Has anyone experienced vertigo-like symptoms, puking and fatigue?  I suffer from chronic insomnia/non-restorative sleep so fatigue is my constant companion.  However, this seems to add another layer of fatigue slapped on top of my normal fatigue.  I started getting vertigo-like symptoms and got sick last Tuesday late night/early morning Wed.  Out of nowhere, just started having these symptoms.  Over it now.  But, that is ALSO when I noticed my spots starting to fade a bit.  Odd timing.  Wondering if this is how my body is ridding itself of the virus and in so doing, is why I got sick?  Just seems odd the timing of getting these symptoms and when my initial spots started fading a bit.  Maybe unrelated.  With flu bug flying around like crazy, who knows.  Just was a diff feeling (like effecting my brain/equilibrium) vs normal flu symptoms.  Who knows.  Just wanted to ask if anyone else had this reaction during any of their dreaded PR experience. 

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    • Posted

      After about a year on this group, I have seen a lot of "weird" symptoms that may or may not be related... I know that mouth sores are part of it. Some people have reported insomnia, many due to the infernal low grade itch. Drove me stark raving batty! People have also said preceded by flu like symptoms. Some have reported joint pain that comes and goes in different joints with no pattern. Some toothache that has no "dentist found" cause. I will put this out there and see if anyone else has experienced your nausea and equilibrium problems... Hope you heal soon.

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  • Posted

    Hi mert, in answer to your question about feeling vertigo etc.  I too experienced a few nasty side-effects including sleep deprivation.  Probably caused by the fact the 'malady' (sorry just cannot think of a proper name to give this wretched disease) tends to effect people in different ways.  We are all so very 'unlike' structurally and internally, that our immune systems etc. only react according to our life-styles/ make-up, eating habits and other factors - which of course is what makes us so individual?  A cup of hot chocolate and a read in bed usually helps me sleep.  And as to your vertigo...perhaps the wax in your ears has become somewhat 'dislodged or moved' which does cause giddiness?  Lately I seem to put all my many affliction's down to PR, and few privately-spoken swear words are known to pass my lips.  And NO it does not help either!  So is PR common?  Now, THAT is the question!        

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    • Posted

      I was told by my derm that it is rare. Of course, the "1 million DIAGNOSED" a year may have nothing to do with how many actual cases there are. I suffered in silence for three months before going to the GP, so, assuming that many other people do the same, who knows? If you hold out 6 to 12 weeks before going to a doctor, it would mostly be gone by then.

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    • Posted

      Interesting.  Your derm says it is rare.  My derm (and Google) say it is common.  Jeepers.  Regardless, it's just a pain in the wazoo.  I like my derm.  She's a great physician.  But, if there is no life-threatening aspect to this, then that means, no funding/grants or research to be done to try and make more sense of this crazy supposed virus.  I would have preferred my derm obtain a blood test AND a biopsy from me and results dumped in to a PR database for research and possible cures.  OR, at the very least, use the blood and biopsy to start putting puzzle pieces together.  Seems to me that a rash or virus that can ravish a body so immensely, AND....if it is "common", would warrant some kind of research or someone qualified to roll up their sleeves a little to see if they can put some similarities and such together with blood and biopsies.  But, of course, assume the same could be said for the "common" cold.  That virus has been around since who knows when and they STILL aren't any closer to a cure for the "common" cold. 

      About PR not being contagious:  If chickenpox and shingles are the same virus (asking as I don't know), then why can't PR be a reactivation of a previous virus?  And if so, what virus?  And, as I asked previously......how the heck do we get this supposed virus if it isn't contracted somehow/contagious?  Is it a virus that our immune system has fought off for who knows how long and for some reason, in a moment of weakened immunity, PR rears its ugly head b/c our body can't continue to make antibodies to fight PR.....AND....do everything else?  If so, then we STILL had to have contracted it from somewhere. 

      I did not have a cold or upper respiratory infection when I noticed my herald patch 4 weeks ago.  Life as usual, for me, and the herald patch just appears.  Guess that is what happens with colds, flu, too.  You are fine, until you aren't.  So, not sure where I'm going with this part, other than......it seems odd to me that you can be just fine, apparently, and then your body is ravished with this virus/rash.  Basically over night.  I'm BEYOND grateful I didn't experience the mouth rash, or horrible itching.  But, it almost but covered my chest, abdomen, neck, entire back, and some on bootie and under arms and upper legs.  Nothing like upper body though.  Today is four weeks since I noticed the herald patch.  And, they started fading a week ago, the morning after I puked and had vertigo-like symptoms.  I get that everyone's biochemistry, immune systems, etc. are so different.  So, perhaps that is how my body is in the process of ridding itself of this crazy rash.  Who knows. 

      Oh, also I noticed someone posted several weeks ago that their doc said they were Vit D deficient.  Coincidentally, two months ago I had blood work done for my yearly physical.  All was fine except my Vit D levels were off the chart high.  And, no idea why.  I live in Chicago.  And it's winter.  Not exactly tons of Vit D overload possibilities here.  So, there's those two polar opposites (one posted Vit D deficiency, and me, Vit D overload) and yet, we both still contracted PR. 

      Additionally, I was never told by my derm about any creams that I saw mentioned in other threads or Head & Shoulders.  Was given steroid cream to apply if itching became unbearable, which it didn't.  And, not wanting to use steroidal cream unless I really needed it, I never used it.  I am using Aveeno shower gel.  Other than my decades of massive fatigue/chronic insomnia, I really am a pretty healthy person.  So, still a mystery as to why something like PR can take over a body and yet, it isn't life-threatening.  It's more unsightly, annoying and embarrassing, more than anything.  At least in my case.  I know there are some who really have a pickle of a time with the itching, and then there are those that are having mouth ulcers, and other places effected that are really uncomfortable.

      I noticed you said that it can trick you by starting to fade in one area, and then pops up in other areas.  And, that is the case with me.  It is now spreading on my forearms and underneath.  Was already in my arm pits and upper arm on the lower side.  But, my neck, back, chest, rib cage, bootie, legs, seem to be fading.  Still VERY there, but lighter and not as angry red.  And not feeling like there are a thousand little pebbles under my skin.  There are some that are getting crusty/scaly in middle that are healing.  So, just letting them do their thing, use Aveeno shower gel, moisturize when I get out of shower, and.......just hope this sucker keeps going away.  My arms are not at all to the extent of being effected (or infected smile..) as the other parts of my body, but......time will tell if it will take over my arms like other regions did.  My heart goes out to those who have had this for months and months or over a year!!!!!!!  Heavens.  What an absolute aggravation and frustration!!!!!!!!!!!

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    • Posted

      Very in depth, thanks. I think we need more of this kind of discussion. Mine seemed to start when I put a new deodorant on. Within 15 minutes I had large red ugly itchy patches under both arms. I could not put any deodorant on for about 6 weeks because it would immediately aggravate it- even the "all natural crystal" and such. (YUCK, I live in south Texas and it was summer). After about 2 weeks, the redness under my arms started to calm down, but a rash started that spread out from there down my rib cage and then on to other parts. After three months I went to the GP, who treated me with first cream then orally for ringworm. At 9 months (I was neck to ankles, inside my mouth, in my ears and scalp, but not hands, feet or face) he sent me to a dermatologist. They did a biopsy. PR. Sent me home with a pat on my pointy head saying it was no big deal and it would go away. Mine never faded and popped up, it just kept spreading and the rings kept getting bigger, with new rings inside.

      I never had any vertigo, no insomnia except that caused by the itching, which was low grade, but maddening. No flu like symptoms before onset. No joint aches or toothaches.

      I did tell the derm about the allergic reaction to the deodorant that started it all, and they said it was not connected?????? Sure. Maybe not in their books.

      I have taken a muli vit, a calcium with vitamin d and vitamin e every day of my life for about the fast 45 years. So, definitely no D deficiency.

      I can certainly agree that there is a possibility of a secondary virus- like the connection between chicken pox and shingles. 

      I work outdoors in south Texas, so sun is my daily friend, and it did not prevent/aid in the duration of PR. Mine lasted 14 months.

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    • Posted

      Hi stazstaz, thanks for the "in depth" look into your intro and time with PR. Yes it's very interesting to hear symptoms caused/given/cures, (or not) for others with this ghastly affliction.

      ?Going back in time(I am now into my eight month with PR and counting...?) I first noticed the rash/spots after a shower in early June 2017.  I had returned from London where I stayed with my son for a few days(this will become relevant later)  I only had a good look at myself because I'd bruised my upper thigh and was really looking at myself (using a small mirror for the awkward angle.  And was gob-smacked to see the rash between my upper thighs!  Thinking I'd eaten something that had disagreed with me I did nothing and waited for the rash to subside.  But I did not feel my usual self and had commented to my son about feeling ill after returning from London.  

      ?To cut a long story, this went on for some time and only when I realised this rash/spots thing was NOT getting any better, did I go to my GP (General practitioner - it's what we call our local doctor's here in England)

      ?This man said I'd got a viral infection and prescribed a course of antibiotic's - which did nothing at all for me. I next saw another doctor who looked at my rash...and immediately said "Pityriasis Rosea" it's cat-related." Nothing can be given except some soluble 'paracetamol' (basically these are an analgesic to relieve pain & reduce fevers/headache/migraine/ rheumatic & muscle pain/ toothache and period pain/ sore throats/and aches & pains for flu - so you get the drift?)  They are an all-rounder!

      ?But when the doctor mentioned 'cat -related' my ears pricked up as my son in London DOES have a cat...which quite often slept in the spare bedroom I'd used!  

      So I immediately googled the PR plus cat-related details...!  But nothing came up.  Well nothing about it being cat-related!

      ?By this time I'd found out about PR and read the blog Stazstaz had given re her own experiences plus ulcerated mouth.  In fact I'd spent so many hours tracking down information re PR, I was becoming quite the expert.  Plus I tried so many products trying to alleviate my mouth ulcers etc.  With my son also sending to America for some 'prreze' cream, (recommended by so many) which cost a whopping £17.85 in customs fees alone - the actual cost with postage costing another £40 when ordered online!!!!!  So I only hope it was worth it?  I am awaiting delivery of this cream as I was out visiting my doctor yesterday.  So I'll let you know if it works. As to my ongoing experiences with PR, well you've all seen the 'discussions' and know the rest...I was referred to a specialist for oral cancer (but thankfully given the all-clear)

      ?I saw my GP once again yesterday and am being referred to ENT (Ear, Nose & Throat specialist. I was also told I'd lost quite a bit of weight!  Hey!  Anyone NOT being able to lose weight ought to go on the PR diet! Making sure they get the ulcerated mouth.  Painful, but gainful.   

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    • Posted

      Rosy!!! Cats? We have cats. I am in my late 50's and we always have cats. Now only 8... My husband and I both rescue the ones dumped in our rural neighborhood, and find homes for them. We have had hundreds pass through our home over the past quarter century, and I had them way before that too. 

      Interesting. It would be great to find out if anyone else got PR after visiting a house with cats when they do not have cats. This, because cats are as prevalent as dogs, so, just having a cat in the house and having PR would be as useless as saying that your odds of getting cancer are greater because you are around air.

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    • Posted

      Hi stazstaz, Re: Cats!  In relation to Pityriasis Rosea.  Although it seemed to me a passing remark - made by my doctor, I do know he has been a GP for many years and is about to retire - so probably has seen more than his share of illnesses etc.  But I cannot find anything online that gives this cat-related remark any authenticity!  Very frustrating to say the least! 

      I too have been a cat lover ever since I was a child - but over the years did not have them as pets (too busy looking after my family) ha-ha.

      Funnily enough, cats are drawn to me - one actually kind of 'adopted' me when I was standing outside in the front garden...winding herself around my feet and then followed me in - to stay for a few days!   I bought cat-food/toys/ extras etc. until my husband informed me the cat belonged to one of the neighbours (whose bungalow backed onto ours)  So I lost my adopted friend.  But yet another comes regularly to sit beside my pond during the summer months (its nice & cool there) 

      Cats being night creatures and roamers can pick up all sorts of 'things' so I am not surprised my GP thinks PR is related to cats. So as you see - having had cats before and NOT contacting PR - but then suddenly getting PR after visiting my son in London, who has one cat called  'Rosie' (I wonder why?)

      Sadly 'Charlie' her partner died a year ago. So now 'Rosie' is spoilt rotten. Ha-ha.  My past experiences with cats/ squirrels(yes we had squirrels for pets too) dogs/ chickens and even a tiny monkey did NOT bring out PR in me.  And as you say, neither yourself or partner (until recently) so we must assume its a one-off case of picking up things randomly. If that makes any sense?  I'm still very much a 'cat' person, PR or not.  

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    • Posted

      Hi I was diagnosed with PR today after treating myself for suspected ringworm. I don’t have a cat nor have I been in contacted with any cats so I don’t think cats have anything to do with PR.  After some googling on what exactly PR is I read that some people believe that it is related to the herpesvirus and could also  be part of  an autoimmune deficiency. I’m not sure what creams you’ve tried but I read that zinc oxide is good at helping to clear up the spots and herald patches and milk thistle tablets. I’m giving the zinc oxide a try here’s hoping it works! From what I’ve read and the images I’ve saw on google I think I have a mild case so far I’ve got everything crossed it doesn’t get any worse so far I have a few hearld patch’s on my back tummy and chest and a rash on my back with a couple of the spots on my legs, neck and arms. 
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    • Posted

      Zinc oxide is diaper rash ointment. It dries your skin. Let us know how it does for you. I found that keeping it moist helped more. 

      Thanks for the no cat comment.I would also think that if cats were to blame in any way, other members of teh family would have gotten it too. That did not happen.

      Yes, there has been some noise about a link with herpes. Saying that it may be to herpes what shingles is to chicken pox. I have never had herpes- any type. Not "cold sore", not genital. 

      ?Anyone else? Let's keep the comments coming!

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