Just dx and given a estrogen cream

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Hi, I just went to my gyno last week and was dx with LS. I think I have had it for about 6 months. I do notice the whitening of the skin and have a couple of folds in my skin. I get small cuts or tears quite often. Sometimes it itches like crazy. My doctor gave me a estrogen cream and said to put it on at night. Just wondering what else I can use or if anyone else uses estrogen to treat it! Thanks

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  • Posted

    I have had fantastic results with something called "Protopic". I inquired with a dermatologist. She recommended Protopic and what do you know. The first thing that actually worked!! It might be called something else in Europe.

    It's not a steroid so it can be used long term. It helps with itching and stopping the shrivelling which makes the skin look like lichen! My vulva is softer and fuller. Once or twice a day the first two weeks. Then after you shower or once eveey other day. Im actually fine now with applying it once a week. You will experiment to see how minimal you can go.

    In conjunction with Protopic I use an antihistamine....it really helps with that itch. It takes about a week for protopic to work but its a the best thing Ive used out of all these other creams or ointmemts! Take the antihistamine right away even if you sont have protopic...and if you dont need an antihistamine during the day...take it around 5 or 6pm or around the last meal of the day. Especially if your itching is worse at night.

    I have also found earing salty foods like potato chips or store popcorn triggers my itching within the hour after eating a lot of sodium!!!! Take an antihistamine right after you eat!!

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    • Posted

      Also needed to add....Ive been through the gamut of steroid creams and other specialty chemist creams by doctors over 9 years!!! I decided to see a dermatologist because the gynecologists (3) had no clue what to do with this. When you think about this...this is a skin disorder, not a uterus or vaginal problem.. I think the dermatologist had better ideas and knowledge with more alternative options that none of my gynecologists did. Also, if you have hashimotos or an autoimmune disease LS might be a form of Inflamation...which is why using an antihistamine might be why it relieves the itching!

      So far Protopic and antihistamines has given me more days as If I dont have it. It has been working consistently for me now for a well over a year with only one flare up that lasted about two weeks.

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    • Posted

      Hi Kubie,

      I'm glad to know that the Protopic and antihistamines worked well for you.

      Can you please tell me more about your current usage of Protopic ? (I mean the frequency you use it)

      In addition, do you have white patches ? and did it disappear with the use of steroid or Protopic ? How long would it disappear ?

      Thank you all,

      Phong

       

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  • Posted

    Hi Jlb, The more I read these posts the more I appreciate the disparity of knowledge and treatment even among specialists. I can only urge you to consult the resources for this thread on treatment protocols, connect also with the association for Lichen Slcerosis, and hit Google Scholar for additional information and recent and reliable scientific research. The most reassuring info I have found was in a webinar on LS given by Dr. Andrew Goldstein that you can find on utube which is very helpful.The main protocol now for LS is topical steroid and the implications of this treatment and the various strengths of topical steroids used to treat LS are very, very important. Do your homework and don't be afraid to ask your gyno for more information. I was one of those who was terrified of using this medication but everything I have read of the scientific literature indicates that topical steroids are, at this point, the best hope for this disfiguring disease. It's not ideal, but the research is there to read and the data is very pursuasive so please do not delay in reading it and educate yourself. I finally got serious about the topical steroids when I learned that even when you are asymptomatic and the skin seemingly calm and comfortable the disease can and will progress. Goldstein and other recent research is showing that there appears to be a reduced risk of vulvular cancer among those who are compliant with this protocol. You will also find some great stuff on all the threads here related to LS and a wonderful community to talk to. Good luck!
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  • Posted

     I am also interested in topical tacrolimus which Kubie has just mentioned in her response to you (re: Protopic) and but while it is fair to say that it is not a steroid, this is necessarily a benign drug. A fairly recent study completed in 2006 by Hengge, Krause et al. in the British Journal of Dermatology showed pretty good results for tacrolimus, but they also acknowledge that it is very early days in using topical tacrolimus and there are a number of health issues to be considered in using this drug as they, themselves, admit. Check out the study, you can find it on line along with several others. 
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  • Posted

    I use estrogen  in combo with Progesterone.  It is part of what helps me. Next to steroid ointment, diet and baking soda baths and rinses.  Cut out sugar to start with, it really makes a difference.
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    • Posted

      Hi hanny,

      My wife was diagnosed with Vulva LS last week. Please can you share some of your experience with us ? We would be deeply appreciated.

      Can you please help me answering some of my questions here please:

      How long have you been with LS?

      Do you use steroid cream ? How long have you used it ? Is it effective in clearing the white patches and improve skin appearance ?

      Is your LS in remission ? If so, how long it's in remission ? and what are you using ? (steroid, estrogen...)

      Thank you hanny. I hope to hear from you soon.

      Phong

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  • Posted

    Hanny - Could you please say a little more about progesterone vs estrogen cream and your own reasons for using it? Are you using oral progesterone or topical? I'm using estrogen cream but again, amounts and frequency are something of a mystery to me. I'm using Betnovate but now waiting to see another dermatologist as the one I was seeing was not much help and the disease galloped along under her care.The itching abated as soon as I started using Betnovate with some real frequency and the baking soda rinses  helped calm the skin.
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    • Posted

      Hi Hanny - I would like to read more about baking soda against fusing. I haven't found it anywhere else but on these threads and would like to know more about it as a documented protocol - can you help me with this? Many thanks.
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    • Posted

      It's the whole package - diet, baking soda, glob, that makes the difference in my opinion.
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    • Posted

      You'll always have LS,  but with this combo of treatment it becomes liveable.
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    • Posted

      Hi mysticat,

      How are you now ?

      Do you still use Betnovate ? If so, how frequent do you use it ?

      Can you please share how long have you been with the LS, and how long have you used the steroid cream ? Is it effective to you, especially in clearing the white patches ?

      Thank you a lot mysticat. Hope to hear from you soon,

      Phong

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