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Tacrolimus ointment vs. steroids for treatment of LS?

Posted , 9 users are following.

alyshia20498
alyshia20498

Is anyone familiar with the clinical studies or have tried Tacrolimus .01% topical ointment instead of steroids? I came across a few clinical trials in which doctors used tacrolimus ointment which is used to treat exczema to treat LS. Apparently mutiple patients saw a complete reversal of symptoms within 6 months of treatment and maintained significant improvement or reversal for at least 12 months. It basically acts like clob but it doesn’t have the long term toxicity effects of steroids and doesn’t cause the atrophy that sometimes happens with extended use of steroids. As someone diagnosed at 24 I am looking for better long term options than clob as I tried to use it as prescribed and it made my clit very sore and caused a few pimple like bumps to pop up. I think a reaction? ( I was just tested for all sti’s) so I know it’s not that) urination and sex are not painful at this point and my itching is at a minimum and I have religiously been rinsing after the bathroom. Introduced baking soda rinse at night and use coconut oil morning and night but  I am still noticing the beginning stages of fusing around my clitoral hood and one of my biggest fears is losing sexual sensation so young in my life. Please let me know if you have any experience with this. It would be nice to get some insight on an alternative before I explore it further myself.

https://jamanetwork.com/journals/jamadermatology/fullarticle/479373

Here’s a study from 2003 I believe 

1 like, 11 replies

11 Replies

  • g22870
    g22870 alyshia20498

    Posted

    I have used  Tacrolimus .01% and have had success with it.  It is called Protopic in Canada. When first using it   I used it three weeks on, three weeks off, two weeks on, two weeks off and then one week on and one week off.  I would use it for two to three nights whenever I had a flair.   It has been close to two years now and I rarely use it anymore.  No fusing.  I keep myself moisturized with vitamin E or Emu Oil.     In the beginning I would sit in a sitz bath for 20 minutes to make the skin softer.   Dry off and then rub the Tacrolimus in very well.   My doctor told me that the skin is thick there and the water softens the skin so the Tacrolimus can penetrate better.   Hope this helps.  I wore skirts and no underwear at the beginning.  I did not wear jeans and the thick seams seem to irritate me.   I can wear jeans now but not day in day out.  I still prefer softer material pants.   However skirts were my life saver.
    • alyshia20498
      alyshia20498 g22870

      Posted

      Thank you so much! I’m glad you’ve had such success. I am going to look into using this!
    • g22870
      g22870

      Posted

      Hi Alyshia, I hope this works for you.   Seems different options work for different people.   Please give it a try.  Like I said in the very beginning I went without underwear and wore skirts...lucky for me it was the summer.  When I did have to wear underwear, I changed often and would always bring an extra pair in my purse just to make sure the underwear were always dry and not moist.....the moistness seemed to worsen my symptoms. I bought white underwear, washed them in baby detergent or a detergent without chemicals and always double rinsed them.  Something I still do to this day. The soaking at night before rubbing in the cream seemed to help too.   Please remember to rub it in very well.  Emu Oil was great for me too as a moisturer.   I bought it on Amazon and I think I also ordered it from Walmart.    Now a days I never travel in the day without a small vial of Emu Oil or Vitamin E cream and extra set of underwear. Hope some of these tricks work for you.
    • susan43705
      susan43705 g22870

      Posted

      Hello,  congratulations on your success with Tacrolmus.  I am going to see if I can get it here in New England. Continued good well being to you.

       

    • linda94703
      linda94703 g22870

      Posted

      Did the Emu oil ever burn? Everything I try seems to irritate and then I am 'rawer' than before...even the Clob is bothering me a bit. Went to a wedding and it was exceptiionally hot that day. Wore underwear under my dress, was sorry the next day and still paying for it 4 days later. Having a VERY hard time of trying to go 'rogue' with a dress on..scared the wind might pick it up etc... 

    • linda94703
      linda94703 g22870

      Posted

      The first Dermatologist ordered this for me due to not knowing whether or not I was having a reaction to the Clobetasol. Then I went to the Immunology Dermatologist for the first time and he restarted me on the Clob regime, so if this doesn't work I am going to ask him about the Tacrolimus. Its tricky stuff... 

       

    • g22870
      g22870 linda94703

      Posted

      Hi Linda.   No the  Emu Oil doesnt burn me.   I buy Kalaya Emu Oil.  Try wearing a straight skirt or dress, something that will not blow up.   Or at least go commando at home, around the house.  I also sleep without underwear at night.......you need the air to keep you dry. If it was extremely hot, you were most likely sweating and your underwear were damp.  That is when I change my under often....to keep my parts dry.   Good luck
  • deethebee
    deethebee alyshia20498

    Posted

    How very interesting. I have never heard of this cream before but it sounds like you've had great success with it.  

  • suzie37971
    suzie37971 alyshia20498

    Posted

    Hi Alyshia , can i ask were do you live? 

    As lots of drugs are not easy to get hold of especially in the Uk where funding is limited and the lack of awareness of LS and the misery it causes.

    Xx

  • alyshia20498
    alyshia20498

    Posted

    I will update if I get access to this alternative and have success!
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