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Just Diagnosed

Posted , 6 users are following.

Krisj2901
Krisj2901

Has anyone used halobetasol for their lichen sclerosus? I've been on it for about a week and it's been like a roller coaster. Some days there is no burning and I can see the inflammation starting to go away and then others the burning is awful and the inflammation is back with a vengeance!

0 likes, 11 replies

11 Replies

  • hanny32508
    hanny32508 Krisj2901

    Posted

    Have you looked at your diet Krisj?  It could be that that is what makes one day worse than another.  Sugar for instance can be of great influence. (My diet: no sugar, no gluten, limited dairy, no alcohol, no caffeine)  When I 'behave' and be careful with what I put in my mouth all is well.  
    • sue49824
      sue49824 hanny32508

      Posted

      Hi Hanny and Kris 

      My daughter has been struggling with LS for years and she is only young. Do you know of a good specialist to see or what she can do to ease and treat her symptoms. She already follows a diet like yours but also has ME/fibromyalgia to deal with and we are very worried about her.

    • Krisj2901
      Krisj2901 sue49824

      Posted

      I am not sure where you live, the specialist that I see is in the Philadelphia Area. I just recently got put back on steroid cream (halobetasol) and was told to use vasoline. Some days I have great relief but days like today not so much. I will be turning 30 this month and hope I can get this under control quickly.
    • hanny32508
      hanny32508 sue49824

      Posted

      Very understandable that you are worried about your daughter, Sue.  To be able to suggest a doctor you may need to tell us where you live.  

      For me it was also very helpful to follow this particular website.  The best result I eventually obtained was due to the combination of doctors and the innovation that happened on this site.  

      It was this site, my family physician, my gynacologist and my nature path who helped me put a handle on things.  

      I live in Canada BC.  

  • sue49824
    sue49824 Krisj2901

    Posted

    Thank you both for your replies. We live in the North of England. I will follow this site with my daughter and suggest she uses Vaseline until we can see another specialiast. I really feel for all of you. No one should have to deal with this on a daily basis. We have an American doctor as our son has autism and I wondered if you can get anything custom compunded in the States as you guys appear to have some doctors who will think outside the box wheras here they are tied to the NHS and funding issues.The steroid cremas just seem to make it worse but we are very worried about not treating the lichen. She is is pain regardless and in pain all over as well as that. I do hope your symptoms improve and I could be of help to you all.
    • hanny32508
      hanny32508 sue49824

      Posted

      Have you tried baking soda baths (1/3 cup) and rinses (three pinches in a Perin bottle and rinse after every bathroom visit, deb dry and then apply coconut oil)  I'm not too fond of using vaseline.  
    • sue49824
      sue49824 hanny32508

      Posted

      No, she hasn't but that sounds a really good idea to use as a rinse as well. She does have coconut oil in the bath water and a bit of salt added but baking soda sounds better. She has been referred to another gynecologist as she has kept been signed off by the local one !! She doesn't know how much to apply the cream and for how long and has been given some hydrocortisone ointment 1 per cent. It has started to affect where she wees from and it is really affecting her. sad Thank you for your message.
    • karen73151
      karen73151 sue49824

      Posted

      Yes!  I live in the U.S. and have a special compounded cream that works BEAUTIFULLY for my LS:

      Eurax cream compounded with Betamethasone valerate in a 3:7 ratio.

      You have to use the cream for 14 days.  Clears it up every time, usually by the 2nd or 3rd day, but very important to keep using for the full 14 days so it doesn't flare back up.  It's pretty pricey, about $100 for a small jar, but it lasts forever as a little goes a loooooong way.  Very potent medicine.

      Also, cut out sugar and plants in the nightshade family (tomatoes, white potatoes, peppers, eggplant, etc.)  Sweet potatoes are fine as they are not a nightshade.  This has done wonders for my LS.

  • Morrell1951
    Morrell1951 Krisj2901

    Posted

    The reason (aside from wondefful support) this forum is so helpful is that it takes many months for the steroid ointment to get things settled down. Most of us get diagnosed in the middle of a bad flareup, so watch your sugar and try to control your stress. Know that yeast has a relationship with LS in many of us - it can turn into a feedback loop. If you feel you're reacting badly to the cream, my pharmacist was willing to issue a refill, but switch to ointment, which doesn't have the extra ingredients that some are sensitive to.
    • Krisj2901
      Krisj2901 Morrell1951

      Posted

      My doctor did prescribe me the clobetasol cream but that was excruciating so she them prescribed me the halobetasol ointment.
    • Morrell1951
      Morrell1951 Krisj2901

      Posted

      Mine took me off it after 18 months and gave my Protopic (tacrolimus). I think I can give it credit for some of my improvement.
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