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Recent flare up with LS

Posted , 16 users are following.

maryella
maryella

Last week had one of the worse flare ups of my LS.  Decided to goggle "Causes of flare up with LS", from which I found this site. Surprised to find so many afflicted with this disorder, started reading the posts and learned about foods to avoid (went to a birthday party before flare up and consumed a large amount of cake and icing and even brought some home!!).  Also normally eat dairy (cheese mainly).  Stopped eating any sugar and less cheese, stopped using soap down there and got some vaseline along with using my RX prescribed. Almost completely clear of symptoms in less than a week!!  None of the physicians I've seen have advised me of any of these remedies to try.  Thanks to everyone for their posts, so glad to have found this forum.

5 likes, 48 replies

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  • Carpe_Diem
    Carpe_Diem maryella

    Posted

    Hi Maryella

    Was that a homeopathic Rx? I get the same reaction from sugar and dairy. I also have MGD which is when the glands which produce the oily component of tears are blocked. It got me wondering whether they're both part of the same inflammatory response autoimmune picture. I reckon so

    Julie 😊

    • maggie27191
      maggie27191 Carpe_Diem

      Posted

      Hi, just to say I feel very sure it's auto immune / inflammation etc.

      Mx

    • maryella
      maryella Carpe_Diem

      Posted

      Hi Caepe Diem

      Sorry, should have mentioned what RX's I've been prescribed.  My Derma Dr. prescribed Clobetasol about 10 yrs ago for itchy scaley spots on my back and got bio that proved to be LS.  Then about 6 yrs ago saw my GP bc of itchy white vagina she sent me to a GYN who got a bio that proved to be LS and prescribed Clobetasol too. I moved last year so got a new dermatologic who said Clobetasol thins the skin and prescribed a cream that was very expensive, so I had it compounded and the compound ingredients are : Tacrolimus 0.1% Tranilast 1% Sorry don't remember what the name of the medication was. It burned when applied so didn't use much and continued with the Clobetasol. This week I've used them alternately.  I have ordered some Emuaid...if anyone knows anything about it, please let me know.  Sorry, don't know anything about MGD.

    • maryella
      maryella sandra01720

      Posted

      Thanks, glad to hear that, should be receiving in mail today.
  • caroline16811
    caroline16811 maryella

    Posted

    That's great news Maryella. Welcome ! There's a wealth of knowledge here and MOST of it gained from reach other and not anyone medical !!!!. Can I just say please don't use Vaseline, it's a Petro chemical and no good for the skin with this condition. I use HYDRMOL OINTMENT as a barrier cream and moisturiser. You can put our on 30 mins AFTER any steroid cream you are using too .Sorry but what is RX ?

    I have flare ups if I binge on sugar too but I'm ok with cheese. So glad you found us and that you are now feeling a lot more comfortable. Xx

    • maryella
      maryella caroline16811

      Posted

      Thanks for the tip about vaseline.   I looked for Hydrmol ointment...where do you get it or is a prescription?  My RX's are Clobetasol and a compound of a RX, not sure of what it was.

    • caroline16811
      caroline16811 maryella

      Posted

      I'm in UK and I get it from my Dr but you can buy it over the counter, no need for a prescription. Actually having listen to a webinar from the expert on LS he stated that LS causes THICKENING of the skin so there is no need to worry about steroid cream thinning the skin as in other conditions. Be sure to rub in the Clob for 90 seconds so it reaches the deeper laters of the skin where the inflammation is. I can't recall theconsultants name that did the webinar but if anyone else can help to direct you to the link I'm sure you would find lots of info re LS on there. I certainly did.

    • maryella
      maryella caroline16811

      Posted

      Thanks so much for the info, didn't know to rub Clob in 90 sec.  Learning so much helpful advise. Know anything about Emuaid...ordered some this week, sounded hopeful.

    • arlee
      arlee caroline16811

      Posted

      You say not to use Vaseline. I thought it was pure. What can it do to the skin?  I’ve been using it as a barrier. Now I’m thinking - keep away 
    • caroline16811
      caroline16811 arlee

      Posted

      Hi Arlee, it is a petro chemical so not good for the skin particularly if you have problems with the skin. I and others have been warned by dermatologist/ gynae definitely not to use it.
    • arlee
      arlee caroline16811

      Posted

      Thanks Caroline. I’m not going to use it anymore.  Now I need to find something soothing and “safe” to use. Coconut oil burned me. There are a lot of ointments and creams on the market but many have ingredients that I can’t even pronounce! 
  • Guppy007
    Guppy007 maryella

    Posted

    Hi and welcome!  Yes, sugar is most definitely the biggest trigger for Lichen Sclerosus.  I agree re the vasaline, as there is stuff far better out there which is easier to glide on. 
  • TexinSF
    TexinSF maryella

    Posted

    I know my docs didn't tell me about anything either except for the Clob cream.These sites with other wonderful women help so much. Try the Borax too. It works great!

    • maryella
      maryella TexinSF

      Posted

      Is Borax like epson salt?  Or is it a cream?
    • hanny32508
      hanny32508 maryella

      Posted

      Borax is a mineral and looks powdery.  You use just a little bit at the time.  (1/6 cup in a full bath) (a few pinches in your spray bottle after bathroom visit) (then apply coconut oil)( is what I do)
    • maryella
      maryella hanny32508

      Posted

      Hanny, thanks for the info on Borax....will give it a try!!
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