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Clobetasol Not Working... Need Help Please!

Posted , 15 users are following.

NTKT
NTKT

My wife was diagnosed with LS a little over a year ago at the age of 27.  Her first symptoms were severe itching and pain in her genital region.  As with many sufferers, this caused trouble with daily life at home & work and much trouble sleeping.  After months of various visits to several different OBGYN's, dermatologists, natural paths, alternative med docs, etc. and through a combination of the Clobetasol steroid cream, lifestyle changes (i.e., wearing lose fitting clothes, periodically moisturizing throughout the day with essential oils, etc.) we had success in the LS symptoms subsiding allowing a return to "normality".  She was able to sleep, to occasionally wear tighter pants, and enjoy love making with no pain.  A month ago the symptoms came back with a vengeance and she was in more discomfort than ever.  The OBGYN gave us another prescription for Clobetasol as well as one for Hydroxyzine to help with the severe itching.  In addition, we also started various "natural home remedies" outlined here and other sites including daily probiotics, supplementing with magnesium and turmeric, taking manuka daily honey, soaking in warm baths of borax & baking soda, eliminating gluten and refined sugars from our diet, etc.   Yesterday, during her follow up visit, her OBGYN said that the LS is worse than it was 4 weeks ago.  Clobetasol does not seem to be working for her.  The OBGYN is recommending testosterone ointment which we have huge reservations about.  We are desperate for something that truly works.  Our hope is that it is early on in the disease to treat her and manage it for our lifetimes till there is a cure.  Please help with recommendations and any helpful guidance.  We are willing to go to any specialist in the world for help. 

1 like, 25 replies

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  • rene73863
    rene73863 NTKT

    Posted

    I had to stop the steroid because of intolerance. My derm switched me to Elidel; Calcineurin inhibitor. There is also another inhibitor called Protopic. They work well to manage symptoms although can cause burning upon initial application. What I have found is that the new med does not improve the integrity of the tissue. Research Mona Lisa Touch laser. This is the only step that has made my quality of life back to normal. I encourage every person to look into this procedure.
    • NTKT
      NTKT rene73863

      Posted

      Thank you rene73863 for your response.  We have tried Protopic and it also seemed ineffective.  This disease is so difficult to grapple with.  We will look into the laser treatment you suggested.  
    • justine89448
      justine89448 NTKT

      Posted

      Just be aware protopic takes at least 6 weeks to start working
  • claire12259
    claire12259 NTKT

    Posted

    Also look up stem cell therapy. It has worked for people x
    • NTKT
      NTKT claire12259

      Posted

      Thank you claire12259 for your response.  We will look into the stem cell therapy.
  • justine89448
    justine89448 NTKT

    Posted

    There is also treatment called the o shot not originally for LS but some women have tried it with some success. It's where they draw your blood take the plasma from it and inject the plasma into the problem areas. There is a doctor in London if you Google o shot and lichen sclerosis the info will come up.

    Also just be aware that the sugars that give me flares are also natural ones anything high on the fructose scale or that has corn syrup, high fructose corn syrup honey is high.

    Wine is a complete no no

    • NTKT
      NTKT justine89448

      Posted

      Thank you justine89448 for your response.  I think you are right regarding sugars... We eat very healthy and the LS went away for a year or so...   This disease is so difficult to grapple with and hard to understand given it came back with no real changes we can tie the flare up back to.    
  • Anna777
    Anna777 NTKT

    Posted

    Hi NTKT, some people can't tolerate steroids.  You can try switching to another medication, or just stop the medication for a bit and see if the baking soda baths, and the Borax treatments help.

    One other thing, you mentioned using essential oils.  People can have allergies to those.  Try using plain emu or coconut oils.  Lastly, it's good you are eliminating sugar and gluten, but be careful with acidic foods, like wine, tomatoes, citrus etc.  I used to be able to  drink vodka but now it causes a flare up for me.  Stress also causes flare ups.  It's a delicate balance, but when you become aware of what triggers flareups, it's much easier to stay healthy. Good luck!

    • NTKT
      NTKT Anna777

      Posted

      Thank you Anna777 for your response.  We've tried all the typical steroid creams/ointments short of the testosterone which was prescribed the other day.  For now, we are holding off on it.  It's hard to tell if the borax and baking soda baths help.  Next step is more concentrated borax directly allpied and/or taking it internally.  She developed a bad yeast infection since her last visit to the OBGYN so trying to get that sorted before tackling the LS with new treatments.  Currently, to keep things moistened, she has been using just emu oil.  We also got EmuAid and Perrins Complete Cream but they have more placebo affect than truly helping it seems.  We eat clean and healthy and are trying to determine triggers diet wise but so far no pattern.  We will try stay away from acidic foods and see if that helps.  

    • Anna777
      Anna777 NTKT

      Posted

      So sorry to hear about her problems.  Sounds like you are doing everything right.  Have you tried coconut oil?  Some people on here have mentioned that certain oils only work for a while.  I rotate mine every other week with emu, coconut, & almond oils.  Once she gets the yeast infection squared away, she may respond better to the treatments.  I highly recommend the Borax solution applied with a swab.  The higher concentration may be of more help.

  • maree83776
    maree83776 NTKT

    Posted

    Hi.  I STRONGLY recommend you read the Borax thread on this site.  Amazing results and almost overnight.  Having been on Clobetasol for a year now (using 2nd daily), I have now started with a saturated solution of borax/water sprayed on the vulva morning and night and allowed to dry and moisturizing between times with an organic coconut oil.   I've stopped the Clobetasol.  I'm only day three today, but can report that things down there are markedly improved...   I'm honestly in shock....  Plea

    Please give it a go and let  us know how you go. All the very best. 

    • NTKT
      NTKT maree83776

      Posted

      Thank you maree83776 for your response.  So far we have been trying borax/baking soda baths at night prior to clob before bed but not the saturated solution durectly applied or taking it internally as some have suggested.  Glad you have good results.  She has developed a yeast infection so going to get that sorted then try the borax protocol and will report back on results.  Thank you.  
    • joanna43-
      joanna43- NTKT

      Posted

      I completely agree with Maree that you check out the thread "an experiment with Borax" here.  My Clob. was not working and I was in extreme pain, itching, burning, tightness etc!  I had had been using it for about 2 months to NO avail.

      Once I started the Borax in a Sitz bath ( I don't like baths) ALL of my symptoms completely stopped. I also made and used the saturated solution three times a day. It has been over 6 months now and I am still totally symptom free!  My body did not tolerate baking soda, it burned and caused redness.  Every "body" is different.

      God bless and guide you both

      You might check out on the web "medical uses for Borax". 

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