Regime working -getting better -try this

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I wrote before that the 1st dermatologist I saw threw "leukemia" and then "T-Cell Lymphoma" at me.  I shared that in case anyone else heard the same thing, not because I believed it. It started with a round red patch that itched on my forearm.  Subsequently, groups of oval shaped red itchy dots broke out everywhere from my neck to the tops of my thighs and between my thighs. The biopsy ruled out syphillis. (ANA test) I was prescribed Clobetazol (physician strengthy cortozone cream for the itchiness)  Nighttime was the worst for the itchiness.  The cream helped a bit. My primary care doctor and I pulled out books together and we came up with PR.  I am in the 25% of people not between 10 years old and 35 years old to contract this. Of course I went online and did extensive research. I also purchased the book my Primary care doc had " "Clinical Dermatology fifth edition by Thomas P. Habif.  Really Great helpful pictures and info.(Amazon has it) Now for what is helping a lot.  I started taking showers (tepid water - not real hot) using a stronger version of Head and shoulders to lather up with and rinsing with tepid water.  Relief follows this shower. It is called DHS Zinc shampoo.  The second part of my regime is going to the beach and getting into the salt water and then sunning myself.  I know these things work for me.  I share them in hopes they work for you.  If you dont live near salt water, then you can just sun yourself, exposing the affected areas.  I am in my second month with this monster of a rash and really doing quite well. I am still not wearing necklaces (hairline on back of neck) yikes! or long pants,  preferring skirts for the freedom from rubbing this provides me.  I will tolerate it and continue with my Zinc showers and salt water/sun regime.  My skin looks kind of dry and flaky, but wildly preferable to those itchy dots.  Some areas itch and I dont see the dots.  It just still itches.This is mostly around my collar bone.  I see some leftover discolorations where the dots were.  I am also following a healthy diet and trying to avoid undue stress. I hope my story is helpful to some of my fellow sufferers. Oh, the kicker is that my husband says that he had this (in a milder version) all through the winter.  He is a stoic and not prone to complaining although he did tell me he had very itchy dots that were worse at night.  My guess is that he most likely also had PR.  This is not necessarily "Proof" that it is contagious, it could just mean that the virus lives here somewhere and he contracted this first and had a milder case.  For public exposure on my part, I attend the YMCA on a regular basis.  I live in the country and my husband doesnt go out a lot as I do.  I think it might be helpful if we had a questionairre to see where the commonalities lie.  Interesting thought.  I am leaving for the beach now.  Carole

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    Hi Catnapj1942, thanks for the interesting and informative post. I have had PR for 4 months now (it was originally misdiagnosed as excema and pityriasis versicolour). I have tried every sort of cream and lotion available including steroids and over the counter and none of them have really worked. I concur with your post above as what has helped is head and shoulders clinical strength (dark blue bottle orange shampoo only available from the U.S. Via Amazon if you are in the UK like me). Washing with this helped calm the itching in the early days and is quite soothing but has not really 'resolved' the rash. I just spent 10 days in Italy going in the sea every day then lying in the sun and this helped tremendously - the rash was so much better. However, now I am back home the rash has worsened again so I think perhaps the very hard limescaley water in our area irritates the rash :-( unfortunately I don't live near the sea. I am thinking of trying Dead Sea bath salts and sitting out in the sun for a while to try and replicate the sea and sun holiday regime! As for how it started, I was extremely stressed and run down so I think the virus struck when my immune system was particularly low. I don't visit any communal areas and none of my family have 'caught' PR off me so I am not sure about it being contagious...I did fall pregnant in the middle of this and unfortunately miscarried (there was a small Italian study that suggested PR increases the risk of miscarriage) I am not sure whether this was related or just simply that a third of pregnancies end in early miscarriage. I hope it clears up soon as all doctors have told me it will 'spontaneously resolve' within 6-12 weeks but clearly that has not happened! I am starting to think I'll be stuck with it forever..will let you know if the bath salts help. Good luck everyone, it is a nasty virus and doctors don't appreciate how distressing it can be.
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    • Posted

      Hi, Thank you for replying to my another post. I am pregnant now too with the recurring PR(5 years bay far and I still keep having PR) ;(

      Afetr you mentioned about miscarriage, I am a bit scared. Hopefully PR doesn't really cause miscarriage. I don't understand why until now there has not been any scientists or doctors who discovered a cure for PR. This is unbelievable. 

      Did you eventually have a baby during PR? just wonder...

      Many thanks.

       

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    • Posted

      Hi there

      Sorry if my previous post scared you. I did ask my doctor about PR and pregnancy and he said there is no evidence that it is harmful. The study I found linking it to miscarriage had very small numbers so it is not clear if the people who miscarried would have done do anyway as they say 1 in 3 pregnancies end that way. I am 11 weeks pregnant now and the PR has just come back. It does worry me a little but I am hoping the doctor is right and there is no link. Hoping we both get rid of this rash soon and have healthy pregnancies :-)

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    • Posted

      Let's hope for the best and PR will go away soon smile I went to see my doctor today. She said PR could get worse during pregnancy. Here we go. Hormones and stress!

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

      I found that LACTO CALAMINE lotion( white bottle With green and pink logo) contains Zinc Oxidize really 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 is pretty safe. No steroid. I will keep using it for another week to see if everything will be gone. Will update smile

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