What is the longest period people have used Steroid ointment?

Posted , 10 users are following.

My doc told me to only use it for 3 weeks but i feel like it is making a difference. Should i keep using it? At what point do you stop?

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  • Posted

    Hi,

    My dermatologist has me on it. I have been on it for 2 years. I don't use it daily but when I feel a flare coming on use it for maintenance. It has really helped me a lot.

    Hope this helps 😊

  • Posted

    Mine is a low potency (Desonide) but I've used it every day for the last six months.  My doctor said the goal is to eventually go down to using it two or three times a week but I think maybe the potency is too low because any time I skip a day, the burning returns.  I'm going to the doctor today to talk about it.  Most people, from what I understand, need 4-12 weeks to get things under control before they try to taper to every other day.

  • Posted

    Hello   My initial treatment started with 3 weeks on and 3 weeks off, then two weeks on and two weeks off and then down to one week.   I also would double rinse my underwear which I washed in baby detergent.  I bought white cotton ones.  I bought a sitz bath and every night sit in it for 10 to 15 minutes, dry off and then use the steroid ointment.   My doctor told me that the skin becomes thicken when you have LS and the warm water will soften it and allow the ointment to penetrate better.   I also tried my best not to wear underware at the beginning  I wore skirts. Luckily for me it was summer.   I always moisturize, by using Emu Oil or Vitamin E cream. It has been two years and I hardly ever have an outbreak.  I might have itchiness ( specially after wearing jeans) if this is the case I moisturize more often and if that doesnt work I will use the onitment for a night or two.
  • Posted

    When I last had a bad flare up my gynecologist, whose is an expert on LS, told me I had to put the steroid on every night for 1 month then every other night fir another month and maintenance of twice a week. She said it grows in a figure of 8 around the vagina and a us so you have to use a small fingernail amount on the front and back area. It certainly kicked the LS into check for me.
    • Posted

      That should have said vagina and anus
    • Posted

      Ok great thanks.

      I have only recently been diagnosed and it was just by chance. I noticed white skin around my clitoris (which also seemed to be fusing/ disappearing)

      I have changed my diet and using steroid and it is improving.

      I might keep using steroid a bit longer then. Thanks so much

  • Posted

    Using the creams over long period of time causes thinning of the skin. Fusing may occur. Use olive oil for keeping moist. I use creams only when flair up. Take care. DIANA
    • Posted

      Oh right ok. Thanks. I will change plan and save steroids for flares then thanks. Its all new to me so thanks
  • Posted

    I have been using Clobetasol for 7 + years.  No problems as far as I can tell for extended use.  I am sure I have read one of the regular contributor's on here describe LS in this way.  - It causes the skin to thicken and creates scarative tissue.  Steroids help the skin to return to the natural state, and therefore thins the skin by preventing any form of scar tissue.  This does not seem to fit with the idea that a healthiest possible LS skin (achieved by correct use of steroid ointment) can at the same time cause fusing of two or more different layers of skin?  I would have thought, get the steroidal action that is right for your skin and severity of the condition, AND this WILL prevent any other issues.  It is the incorrect use of a steroid ointment that will cause return of, or further LS severity issues, I would have thought?!

    • Posted

      Oh crikey its so confusing🙈. I have just been using dermovate which is a step down from clobetesal.

      I will may try and wee bit longer and really monitor what is happening. What you say makes sense. Thanks

  • Posted

    I know what I was told. Take time to read up on all your medicines. Iam trying to manage and live with it to. I only pray and wish you well. Just need to talk Iam here. Diana
    • Posted

      Thanks diana. I will gather me info. Same too if you need to talk xx
  • Posted

    I certainly don’t want to mislead you but I used it for three years pretty regularly and then two years on a need to use only basis. I know haven’t used it for about 4 years. Just Vitamen E capsule cut and spread over area at night and paw paw cream morning. Works a great once you have everything under control,

    good luck x

    • Posted

      Hi Deb

      Thanks its good to have your input. General consensus is its ok i reckon. I will go another week at once daily and see. Thanks x

  • Posted

    Hi there .... the steroid is a permanent thing here in the UK.  I, like another member on the replies here, found that cutting down to twice a week was not enough and I use it mostly alternate days albeit using Betnovate as this was the only steroid that would agree with me.  You will eventually find a balance of using it that works for you.  I say don't stop as there are reports from Australia that using the steroid has prevented cancer.  Just my thoughts and advice from experts here in the UK.  Wishing you well. 

    • Posted

      Thanks Paula. Seems the general consensus is to keep it up. Cheers x

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