Recurring Pityriasis Rosea

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Hopefully someone can help or provide suggestions how to beat this skin disease...Many thanks for reading this smile

* It all started in 2010, on my back with small white dots that turned red and then turned bigger brown with scales. They are NOT itchy (had read it is normally itchy). Saw my first dermatologist in 2010. He did not perform a biopsy, and said it looks like eczema. He prescribed CLOBEX (clobetasol propionate) lotion 0.05%. I used this steroid lotion for 1 week. All the red dots went away. However two weeks after they returned, with even more dots over an expanding area. I continued using the same steroid treatment, even though it was bad for me. I used the lotion for one week, then stopped.

I have never had a big patch like everyone else. They are always small dots but there were thousands of them... After 2-3 years of using CLOBEX, my insurance decided to not cover this medication. The price in the US is now $1200.00! How can this small bottle of steroid lotion cost as much as a diamond ring!

* I can't afford to buy this lotion anymore. I went back to see the same doctor. He gave me other steroid lotions but they didn't help since I didn't know that CLOBEX is the strongest one in the US market. Nothing less stronger can help my skin now. He sent me to do food allergy tests and skin patch tests. I am not allergic to anything. I actually tried to stop eating meat for 3 months. It didn't help. I stopped eating gluten for another 3 months. It didn't help. I tried Aveeno eczema lotion, Cetaphil body wash, organic shampoos and Dove soap, Gold Bond lotion, Calamine lotion with Zinc Oxide, Eucerin sensitive skin lotion, 100% organic baby detergents, Coconut oil, oatmeal bath, salt bath, etc. None of these treatments helped.

* All I have learned is that the red dots are related to stress, body being over-heated, fever, hot flush and PMS (it always started to flare up before my period started).

* I decided to change a doctor. My second dermatologist told me the same, that this looked like eczema. He suggested I soak myself in bleached water (YES, put a cup of bleach in the bath tub and soak in it for 15 mins). I tried. It didn't help. He also prescribed another steroid cream which didn't help.

* I decided to change to another doctor. This third doctor did a biopsy on my back. The pathology result came back. She said it is "subacute eczema". She prescribed me another steroid lotion, which didn't work.

* I decided to give up and use the generic version of Clobex, which is still very expensive (about $550.00).

In 2014, my stress level reached a new peak and I had bad flare-ups of these red dots everywhere on my back and my chest. It had never expanded to the chest before, and this only increased my stress. As I mentioned, once these dots found a new location, they will then always show up there during a recurrence. 70% of my body was now covered with dots. My doctor prescribed me a steroid pack (pills) to take for 1 week. I took them all for 1 week and all dots went away. My body was clear! Unfortunately, 1.5 weeks after I stopped the steroid pills, I had the worst breakout everywhere over more than 80% of my body.

* I went to see a new dermatologist. She did another biopsy. She said it is not eczema. It might have been incorrectly diagnosed. The pathology result came back and said it is PITYRIASIS ROSEA. This word is new to me. My doctor said she wants to try narrow band UVB ray. Now I am waiting for my first appointment

* While waiting, I tried to expose my skin (where the red dots are) in the sun for 30 mins in the morning for 1.5 week. However it has not improved and looks exactly the same.

Does anyone have the same symptom as me. I am running out of hope, but will try the UVB ray treatment and update.

Note: strange things are sweating and humid weather helped make my skin better..

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4 Replies

  • Posted

    Hello, sorry to hear you have been going through this for so long. It is a nasty, frustrating condition. Unfortunately I do not think there is a cure as such - perhaps certain creams that help but I've found nothing makes it disappear completely. Long term steroid use is not recommended as it makes the skin thinner (not to mention the cost of the creams). Some people recommend coconut oil, aveeno oatmeal lotion and clinical strength head and shoulders shampoo applied as a body wash. I have tried all of these and although they provide relief from itching, they do not make the sits disappear. I found bathing in the sea then drying out in the sun helped a lot but unfortunately I don't live near the ocean so once I came back off holiday the rash returned. I had it for 5 months before it eventually went away by itself but annoyingly, 1 month later it has returned with a vengeance so I think it is a myth when doctors say it rarely recurrs. I am now pregnant too so don't want to use steroids or clinical strength shampoo on my skin or visit sun beds so I guess I just have to wait for it to go by itself. I do think stress plays a huge role in this condition. Possibly diet too - I have been under a lot of stress recently and my diet has been poor due to constant morning sickness so I think this could be a factor in the recurrence of the rash for me. Good luck, all you can do is try and keep stress to a minimum, eat healthily and be patient - it will go away of its own accord eventually but unfortunately I think once you've had it you are likely to get it again whenever you are run down.
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    • Posted

      Hi Smudgey1,

      Thank you for replying. what a coincident~ I am also pregnant in my 1st trimester while I have been having PR for 5 years! Both of my dermathologist and OBGYN in Manhattan, NYC told me it is okay to use Clobex lotion but not everyday. They said to only use it once ot wice a week as needed. So, I only use the steroid lotion now only once a week when there is flareups. My PR is never itchy. They are small and big red dots. they are never big patches. 

      what trimester are you? are you still having PR? for how long?

      I am also very stressed during my preganacy. I am trying to control my stress level but it is very hard.

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  • Posted

    I have had this condition since around 2004-2005.  I believe initially it lasted only a few weeks to a month, but it came back for a longer stay later on.  I would say it went into complete remission shortly after joining the Army 2006.  There was only 1 occurance during my entire 3.5 years in the Army around 2009-2010 where it came back, but again...only lasted a few weeks to a month.  I would say around 2011-2012 it came back with a vengence after I was out of the Army, and would go away and come back like clockwork.... here for several months, then gone.  This continued all the way up till 2014, when it basically came back...and stayed.  It hasn't gone away since mid 2014 to present.  The little red b******s are speckled along my forearms, biceps, chest, back, thighs, and shins.

    One thing I have noticed since it came back is, any significant cut to my skin results in the PR red marks appearing after the wound heals.  I had a small patch of skin ripped off down to the white spungy layer underneath on my right hand, and after it healed, a PR red mark appeared in the exact spot the wound was.  Also on my right forearm on the inside I had a fairly deep cut lengthwise that also healed and turned into a PR red mark in the exact shape of the healed wound.

    This is some seriously interesting, and frieghtening information I have NEVER heard anyone else experience.

    Like you, I have tried a steroid cream (triamcinolone) which does seem to work for me, but considering the cost and how quickly I use up a tube...I cannot afford to buy it anymore.  Especially since shortly after I stop using it, the marks come back.

    Typically they don't itch at all, but i'm almost under the impression they do, but I have just lived with it for so long that i'm used to it.

    The whole head and shoulders, lotions, suppliments, etc. etc. etc. don't do anything but make them go from flaky patches, to just plain red.  One thing I have tried as of 3 days ago is Aloe Vera.  So far I am liking the way it pales the redness ever so slightly.

    I'm sorry I can't offer any advice on what to do... I have been living with this for probably around 11 years or so.

    Looking back on how it went into remission for so long while in the Army, I also started a strict workout routine 3 days ago when I started using the Aloe Vera.  Only thing I can think of, is I did insane amounts of exercise, which COULD be a factor...

    Oh and I plan on getting back into tanning beds, because I had AMAZING success with those.  But clearly they inherantly have their own risks when using, but I don't really care at this point...

    Best of luck, and hopefully something in this huge ramble gave you some insight.

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  • Posted

    NOTE:

    UPDATES :

    I went to see my doctor today. She said PR could get worse during pregnancy. Here we go. Hormones and stress also trigger PR!

    I have tried salt bath for 1.5 month now. It isn't helping me.

    I found that LACTO CALAMINE lotion( white bottle With green and pink logo) contains Zinc Oxidize somehow helps. I felt burnt at first, my red dots got flattened, and peeling but after 2 days some of the dots went away. However, not all dots went away...just some..I guess it's at least something. The lotion got No steroid in it. I assume it's safer than clobex. I will keep using it for another week to see if everything will be gone. Will update more.

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