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Is anyone being treated for Extra Genital LS ?

Posted , 8 users are following.

frances6666
frances6666

In the last six weeks or so I have developed patches under my breasts, my shoulders and the back of the neck. They are classic LS presentation, silvery white patches. I don't imagine that potent steroids are the 'go to'  treatment for this, due to the large surface area and thinner skin.

Any input or experience would be appreciated. Cheers 

0 likes, 15 replies

15 Replies

  • sally41666
    sally41666 frances6666

    Posted

    Hi Francis

    Yes! I have patches inside my cleavage known as cigarette paper patches for the white textured skin. My specialist said to try clob and it worked very well though she thought it might not! 

    The skin was red and angry around the white patches and now it’s all but gone! 

    I hope this helps,

    Kindest regards

    Sally

    • frances6666
      frances6666 sally41666

      Posted

      Thanks Sally. 

      I'm due to see my GP in a couple of weeks, so I'll see what she thinks.

    • sally41666
      sally41666 frances6666

      Posted

      This came from my specialist- my GP went down the cancer route as they seem to know very little about my LS or dermatology! She said the clob doesn’t usually work on it but in my situation it worked a treat! No issues even for a big busted lady in this hot weather!

      Don’t think it can hurt to try a test patch!

      Good luck

      Xx

  • Guppy007
    Guppy007 frances6666

    Posted

    Hi frances, in the past I have had itching on my feet and back but nothing too serious and it eventually went.  It sounds like you have it quite bad.  If it causes you a lot of distress or gets worse then you may want to speak with your doctors as I read somewhere that there are Meds like Methotrexate that help with this.  

    Or alternatively, you might want to google  LDN (Low Dose Naltrexone)  which has rave reviews and is probably something other people might want to consider with severe LS.

     

    • frances6666
      frances6666 Guppy007

      Posted

      Thanks Guppy. 

      Sounds interesting, I'll certainly check it out.

    • brigitte_27336
      brigitte_27336 Guppy007

      Posted

      Guppy hi , those meds that you just mentioned.... wouldn’t they work for Vulvar LS? 
    • brigitte_27336
      brigitte_27336

      Posted

      Let me rephrase this shouldn’t we try those meds for down there?
    • Guppy007
      Guppy007 brigitte_27336

      Posted

      Hi Bridgitt, yeah it's an interesting point.  That being said the methotrexate is a very strong medication and only to be used for extremely unmanageable cases. 

      But, the LDN is something entirely different and definitely worth trying for women that are really struggling..there is so much info about LDN on the web and if you have a sympathetic GP he might let you try it.

  • Tybear
    Tybear frances6666

    Posted

    Hi yes I have them too, they do not bother me at all, so I leave well alone xx
  • suzie37971
    suzie37971 frances6666

    Posted

    Hi Frances, yes i also have them on my breasts and stomache and thighs. Very itchy in the heat but i keep moisturised and have used the Synalar on odd occasion. 

    They do calm down if you keep on top of them.

    Think some of us have extra sensitivity .

    Hope you feel better soon we all find a way .

    This site is wonderful with some wonderful women with advice x

  • dixie501
    dixie501 frances6666

    Posted

    Hi Frances, Have you tried to do the elimination diet? For me I eat that way and when I break it and have gluten I get LS flares which are brought under control again by eating healthy and staying away from gluten, sugar, soy and dairy. Try that for about 3 weeks and see if that does help. So what can one eat? If you can't pick it or you can't chase it, you don't eat it. So fresh veggies, chicken, turkey fish. My FMD told me beef is inflammatory, so I don't eat it and when I do . . . I pay a price. It sucks not being able to eat whatever you desire, but it does work. And I use Emuaid to help with the dryness, etc.  Hope you can get this under control and feel better soon.  :-)

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