Question on how long to use steroid during outbreak

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When I have an outbreak of LS, how long should I use the Clobetasol?

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  • Posted

    Hi Jackie,  My doctor told me yesterday to use the Clobestol every night for 4 weeks, then every other night for 4 weeks, then twice weekly for 4 weeks.  This should contro the inflamation.  My doc also said it is okay to layer the ointment, meaning put the Clob dow first, then if I wanted to for extra moisturing, to use whatever cream or ointment I prefer.  During the day I would use a moisturizer.  

    I've had LS for 10 years or so and did not follow this regimen, so as a result, I'm not in great shape, so I am basically starting over.  I was just using it when I had a flareup or insane itching.  

    Good luck.  HOpe you are a better girl than I am.

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    • Posted

      Hi Susan,

      Is aquaphor (a barrier cream) sufficient to use as a moisturizer?  That's what I've been using.  Btw, I have insane itch too.  I might go back to the daily clob, but I want to ask my docs first.  What if the itch doesn't go away after you decide to taper down?  I don't think it would be safe to take clob daily forever, right?

      Lisa

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    • Posted

      Hi Lisa,  I haven't heard of aquaphor.  I've tried Desitin, Aloe Vera, Emuaid, Vaseline, CBD Oil, Cannabis oil (still trying this), Castor Oil, Witch Hazel.   None of them took away the insane itch.   

      I do not think it is safe to use the Clob daily forever, but the initial recommended regimen should get rid of the inflammation/itch for a while.  Have you googled Clobestol?  It's not a good long-term drug, it's a steroid with side effects.  But it is really the only med that doctors recommended for this dreadful skin condition. It probably comes under different names as well.

      Good luck!

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    • Posted

      Hi Susan - I agree you go back to original regime but interested that you say you were advised to put clob on first before moisturisers. My GP said the opposite as you could spread the steroid around too much by applying moisturiser in top of it. I think that it's best just to use steroid on its own overnight and moisturise during the day as applying over top of moisturiser might not penetrate. So confusing. 

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    • Posted

      Hi Sarb,  Yes doc said that the first line of defense should be the Clob, then moisturizer if I wanted to.

      To each his own.  I don't consider the Clob to be a moisturizer.

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    • Posted

      I just found out my insurance doesn't want to pay for a  new prescription for my Clobestol.  I"m so p****d!!!!!  My doctor's office is fighting it.  They want to give me an inferior product and asked I tried something over the counter.  Are they kidding? 

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    • Posted

      Thanks for getting back to me, Susan.  I see a dermatologist tomorrow and an LS specialist next month.  I want them to stop my itch!  Since I still have itch with clobetasol, maybe they have other suggestions for me....either go back to daily clob for now or try another steroid?  Or some other means to get the clob. like through a pill or injections?

      Lisa

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    • Posted

      I can't believe you have an itch with the Clob.  It's usually so effective.  Really sorry to hear that.  Someone on here had suggested Witch Hazel.  Have you tried that?  Maybe ice packs on the itch.

      Good luck with the LS specialist.  Sounds like you are doing everything possible and in touch with all the right medical personnel. I'm curious what the dermatologist suggests.

      Take care Lisa.

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    • Posted

      Thanks, Susan.  Clobetasol used to work for me until menopause hit.  So now what?  Maybe if I go back to the daily routine of clob?  Who knows.  Ice packs only work temporarily.  I am sensitive to everything topical so I am afraid to try the witch hazel. Thanks so much for your help and support!  Lisa
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    • Posted

      Strange enough Lisa, I have a little twinge and itch even with the Clob now.  I'm just coming out of a nasty episode.  I'm not scratching though hoping the Clob will work again like it used too.  This is so maddening.  

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