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LS on other parts of the body

Posted , 7 users are following.

patricia38248
patricia38248

Hi everyone, I've not posted anything for a while but have been following the discussions closely.

My question today is - has anyone got, or thinks they may have got, LS on other parts of the body? I have recently developed angry red patches underneath both my breasts which have begun to itch like mad. No white patches or other signs of LS yet but it seems too much of a coincidence since I have never had anything like this before.

I also had an episode about three months ago when every part of my body started itch, this went on for three weeks. The doctor could only prescribe Piriton. This died down and then my lower legs came up in a bright red rash, looked like someone had poured red paint over them. Again, the doctor prescribed Piriton.

I am sure these are all connected but can't seem to find any answers.

So, any suggestions will be thankfully received.

0 likes, 11 replies

11 Replies

  • bearmama
    bearmama patricia38248

    Posted

    I do.  In the beginning it looks like white dis coloured spots, 2-8mm in diametre.  As time goes on the spots get a wrinkled paper appearance & have a raised texture.  I have spots all over my upper back & breasts.  I treat with clobetasol 2x per day right now & have completed 1 round of UVA1 full body therapy that included gymnastocs move to catch the vulva too.  It looks like it's getting a bit better -skin is softening & spots appear smaller but it's a very gradual change.
    • marey
      marey bearmama

      Posted

      interesting ...i heard that infared can help too....and that it has a de-toxing effect especially if taking regular saunas and sweating out as much as poss.
  • patricia38248
    patricia38248

    Posted

    Thanks bearmama, it's good to know I'm not imagining this is LS. I'm sure it is. I'll try your suggestions, I think we are all thankful for any suggestions which might ease this wretched disease.
  • sheila49099
    sheila49099 patricia38248

    Posted

    I too have LS and itch on my ankles and upper back.  I use Betaderm which is a

    cortisone cream.  The other places I itch is the rectum and vagina.  I have lost the

    labia inner and not much of the outer is left.  If I could get it back I would be so

    happy.  I don't think that is possible though.

    • Morrell1951
      Morrell1951 sheila49099

      Posted

      Sheila, I've just spoken to you elsewhere and looked back to see what you'd said when you introduced yourself. This cream you're on is much lower strength than most of us have – it's in the upper-mid strength class, which most of us are on 'ultra potent' Clobetasol, which we need to penetrate deep to the 'basement' of the thickened LS skin. If you missed out on that gynae visit, I really think you should be finding another before you head south. Or a dermatologist.
  • heather56754
    heather56754 patricia38248

    Posted

    I think G.Ps generally struggle with a diagnosis for this condition. I had to be referred to hospital and have biopsies before mine was diagnosed. This took over a year. Having started with my vulva, I think I now have it in my mouth which is incredibly red and sore. I went to my G.P. today who said she didnt think it was L.S as the signs are usually white patches and line.  Luckily she seemed quite informed about the disease. But, she did say that if it was, there is not a lot that can be done about it. So I would continue to go to your Doctor and get a referral to a dermatologist who knows what they are looking at. It seems to me that steroid cream is the only option. I also use emu oil in between applications to ease dryness. Dont know what the option would be if it is L.S. I have in my mouth. This is a very distressing disease about which not a lot is known.
    • sheila49099
      sheila49099 heather56754

      Posted

      thank you for your reply.  I had a biopsy years ago - the doctor being a specialist was actually quite uniformed. Different doctors told me to not be so silly and to 'stop the scratching' I finally found a good GP who recognized the problem and sent me to another specialist who soon left town and it was too late for me.
    • mary_58782
      mary_58782 sheila49099

      Posted

      I too have LS over parts of my body. It first started out under and between my breasts. In addition to the typical areas,( vagina,rectum etc.) I have it all over the front of my body, my rear and it has now started on my shoulder and back... So yes, it can appear in other locations!!!
  • marey
    marey patricia38248

    Posted

    so sorry that you have this patricia.

    I currently have some LS which is improving ....but I am still working on an overall strategy...i don't think the answer lies with more and more steroids.

    how would you feel about trying all you can to cleanse your body and your enviroment?

  • patricia38248
    patricia38248

    Posted

    Thank you everyne for your very helpful replies. I am so sorry that so many of you are obviously suffering far worse than I am. I do feel for you and wish I could help. My dermatologst gave me Dermovate ointment when I told her that the cream seemed to be making things worse and the ointment seems to be helping although I don't take anything for granted.

    At present I am trying to get rid of as much sugar as I can from my diet and I'll take it from there. I do agreen, Marey, that being careful with your diet can help.

    I also wonder whether there is an underlying cause which makes all skin on your body susceptible to problems. I have always had dry sensitive skin which didn't trouble me too much as long I moisturised well so I wonder whether the LS is all part of this? I have had localised itching from time to time which disappeared so didn't think too much about it. Sorry, I'm rabbiting on trying like we all do to make sense of this horrible condition. Thanks again, everyone and good luck with whatever you try.

    • marey
      marey patricia38248

      Posted

      sounds great as a first step....! please keep in touch. 

      I absolutely agree and think you are on the right lines with your line of enquiry about body cleansing and de-toxing. x you are not rabbiting...what you are saying is of the utmost value!

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