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clobetasol regime

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anna80050
anna80050

I was diagnosed with LS a few months ago...I am still not clear about clobetasol regime..should I ue it daily till all the white patches have gone? I also have a very sore red are near the perineum..not on skin..that seems to get even more painful if I put the ointment there. Would love some feedback!

1 like, 18 replies

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  • suedm
    suedm anna80050

    Posted

    Welcome to the club no one wants to be in. this is a good site and the participants are very caring and helpful

    If i was you and newly diagnosed i would go to the Dr goldstein lecturehttps://patient.info/forums/discuss/dr-goldstein-lecture-271556

    He is an authority on LS in Washingtom DC -

    I am in the UK  and as you may have read many are from all around the world, but facing the same issues. AND PLEASE Anna don't search out  horrid stories about LS on line... there is a wide range of severity and most are  not at THE most severe end of the spectrum

    If you have read the various threads on this site you will find a great deal of knowledge and help

    As to the Clobetasol, basically a pea sized amount massaged in after a warm bath ( ideally in the evening so you have the night time repair- body renewal in place) I was told to use it until the symptoms went and that was for over 6 months and i had seen the consultant  again by then Then dropped down to a maintenance dose of x2 pw, unless there was another flare up. It does sting a bit sadly,  but the therapeutic chemicals that reduce the inflamation that is in the deep tissue of us who have LS need to be applied for the rest of our lives...Do look and listen to the lecture it explains a lot - it takes an hour and i screen shot the slides to pour over later.

    As your perineum is also affected use the ointment there too. After the massaging in for a minute and a half leave the area  for an hour or so then  put on the moisturiser and then the barrier ointments

    The current wisdom is that urine on the skin will exaberbate the irritation and pain.Keep faecal material off the skin too - The use of a bidet is wonderful if possible, loose clothing no bleach in the wash or biological washing powders - no soaps or smellies in the bath

    Good luck and dont worry - stress is THE greatest enemy of LS sufferers, others find aspects of their diet can be associated with flare ups too

    Best wishes And do ask as many questions as you like - there will be some one out there who will be only too pleased to help. Everything from diet to sexual problems are topics that have been raised. If necessary  use the envelope  under the names to write privately to one person

    Sue

     

    • anna80050
      anna80050 suedm

      Posted

      Thanks so much for replying...so am i right in saying that Clobetasol should be used daily till the white patch has gone?
    • suedm
      suedm anna80050

      Posted

      Yes, Are you sore and itchy? what did the consultant say to you?

      where are you ....in the UK?

      Have a look at the start of this site  Alan the moderator has put on some leaflets from others  that are very interesting too.

      Basically use the ointment until the systems are no longer causing you a problem, THEN when everything has died down  you go on to the maintenence dose- usually x2 a week

      Dont worry about steroids thinning the skin - this is what is wanted in our skins as the white patches are effectively scar tisue that is much thicker than normal tissue and  needs to be thinned to allow  the inflamation to be treated. Doctors - esp GPs are not too familiar with the treatment - for some reason - My practice nurse says  her medics never remove the knickers of their patients to actually have a look, they just think it is thrush and send pateints away, or send them to a gynaecologist. Sometimes to a dermatologist. IF you are VERY lucky you get to see a vulval expert..very few and far between

      Sue

    • suedm
      suedm anna80050

      Posted

      I forgot to say do look at your undercarriage in the mirror- use a shaving mirror and a good light- look at it regularly and check for changes

      Good Luck

      S

    • anna80050
      anna80050 suedm

      Posted

      sue...I am in the US...we are lucky to have many vulval experts..at the moment I'm seeing my gynae, she seems competent, but did sa she''ll refer me to a vulval consultant if she hits a wall. I am sore...I think related to the red sore patch, she suggested just to use oestrogen cream there..
    • suedm
      suedm anna80050

      Posted

      There is a theory that eostrogen cream actaully helps the area to heal whereas the steroids reduce the swelling and soreness. When the soreness goes  is when the ointment is normally reduced to x2 pw. Sometimes the white patches - depending on the type - never really disappear- there are so many variations. THE only common denominator seems to be stress of one sort or another
    • anna80050
      anna80050 suedm

      Posted

      to summarize...I am using the eostrogen cream on the vey red patch and clob on the whote patch daily..does this sound ok??!!
    • suedm
      suedm anna80050

      Posted

      Sounds a good way to go - Do you have any fusing? If so i would consider using the eostrogen on that area too- but go with what your medic advises

      Do go to the Dr Goldstein site - it will explain a lot- it is for patients and health care workers  and it is NOT a commercial site - just jolly usefull

    • patricia86334
      patricia86334 anna80050

      Posted

      anna....I only just started reading this new post.  I want to say to you that my ob/gyn expressly told me NOT to  put any estrogen cream on the outer area.  She said I had to only get a tiny amount inside...twice a week...for vaginal dryness.   I decided not to use the estrogen at all.  Also, she told me NOT to put anything at all on the skin, only the clobetasol.  On my own I decided to use a bit of emu oil and/or coconut oil as the "stickiness"  sort of feeling is bothersome, and I thought that might be what is causing the fusing anyway.  The stickiness, I mean.   So when I read that your dr. told  you to use the clobetasol at night, to wait and use a moisturizer and then an ointment...I want to ask you if the moisturizer is a prescription?  the ointment a prescription?  I have a dr. appt. coming up and I would like to ask my dr. about those things.  I never use as much as a pea size amount of the clobetasol either.  I was afraid of it as I read the leaflet info and was too afraid of the thinning...I thought that was a bad thing to be avoided.  But even tho for two years now I have used only a thin, thin smear of the clobetasol, my symptoms of the whitness and two dark spots are gone....I am seeing more fusing happening, tho.  I am also in the US, in the South.
    • patricia86334
      patricia86334 suedm

      Posted

      Sue:  I made a mistake and wrote to  "anna" and meant to be writing to you.  I get confused with the introductions at the top of the posts as to who is writing...oh well.  I had some questions for you that I accidentally wrote to "sue"....I guess my letter is the last one on here for now...if you would be so kind as to read that letter and maybe respond??  I wanted to know about the moisturizer and ointment you use after using the clobetasol.  Thank you....Pat
    • Morrell1951
      Morrell1951 patricia86334

      Posted

      Patricia, the clobetasol ointment is one of the standard prescriptions for LS. If you look up a chart of topical steroid strengths you'll see clobetasol in the 'ultra-potent' section at the top. If used on healthy skin the side effect is thinning. Using it on LS means thinning on purpose. Various doctors mentioned by contributors here may or may not recommend moisturisers and there are a few expensive ones that can be prescribed, but they can also be bought over the counter I think. I can't use the estrogen either, so I really slather on the oily stuff.

      The thing I just realized after a year of treatment is that the stress-induced flare I just had has healed in two days – probably because the new white patch was relatively thin, so the tear wasn't deep like they used to be. This seems like a very good reason to maintain clob use twice a week no matter how 'in remission' LS appears to be.

      I wasn't at all clear about how much I was using. But as it turned out I used a 50 g. tube in one year, which I read somewhere is mid-average. Using a lot less may be counter-productive. If I were you I might step it up to pea-sized, focusing some on the part that's been fusing.

    • patricia86334
      patricia86334 Morrell1951

      Posted

      I was thinking that myself after reading all of the above letters.  I have barely used 1/3 of a 15g tube in a year.  I thought I was doing the right thing as I was afraid of not only cancer from overuse...but a lot of the other side effects of steroids....my daughter, who died from brain tumor, was on steroids orally, and I know they were much stronger, etc, but when I saw her side effects I got very scared of any steroids.

      I didn't know it was best to use the clobetasol at night, either, or to soak tissues first.  I am learning a lot here and I am very grateful.

    • suedm
      suedm patricia86334

      Posted

      Hi Patricia I was prescribed Diprobase an emollient moisturiser for washing - i also find it keeps urine from my skin - others have suggested a vaseline ointment- I found i didnt need more than the Diprobase- i have a Kg pump every month or so - it is also a brilliant face and hand conditioner!! so i only ever use it to wash with - I am in the UK  Dermeze ointment or Sorbolene cream are  the nearest  compounds in Australia - where i ran out and needed more
    • suedm
      suedm patricia86334

      Posted

      I did have an oestrogen cream prescribed by the GP on request but when she checked withthe gynae i was told to stop as i was on HRT- ie hormone replacement therapy -and they didnt want me to have too much oestrogen - in case of a breast cancer risk was raised. I wasnt too enamoured of this particular GP as she wass a knowitall non listening sort from NZ who had marital problems of her own - i moved from her surgery to another one 5 miles away and i am trying to get info into the practice, as  the nurses had never heard of LS and where one of their own staff members have the condition...
    • suzanne00
      suzanne00 anna80050

      Posted

      Hi Anna--I use estrogen cream (a bioidentical formulation) all over the vulva to help keep the tissues as healthy as possible (applied in the morning) and not to add to the atrophy that goes along with menopause and with LS.  I also use the clobetasol ointment (before bed) on the parts of my vulva where my symptoms concentrate, which for me is from the clitorus throughout the inner labia, down to the external introitus (I don't have problems currently with my perineum or anus).  I made a mistake of concentrating initially only on the white patch area and missed that I was having fusing issues with my clitorus and other areas developing white patches, so now I assume that this whole inner area is struggling with LS (it's either whitish or reddish) and treat it with the clob.  So I am trying to be more generous with both the estrogen and the steroid.  When my gyne first suggested that the estogen cream could be irritating my vulva and exacerbating the LS, I applied elsewhere for a couple of months, only to have everything get much worse.  Now that I am applying the estrogen to those tissues again, there has been much improvement.  Thought that I might offer my experience.  I hope that you find relief soon!  --Suzanne
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