Clobetasol

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Good to see so many positive stories here. As a man obviously I'm in a minority. After 3 years of suffering with this and seeing doctor after doctor who didn't know what it was, I was finally diagnosed with LS by a very senior London dermatologist who specialises in men's problems.

I've been given clobetasol ointment and asked to use it twice a day for one month. I was also asked to use a barrier cream called Epiderm but this really aggravates the area so have been advised that I don't have to use it and can stick with just the clob.

My question is that how long does it normally take for people to see a difference after using the steroid? I'm one week in and no change yet. I'm actually starting to find the area more uncomfortable as rubbing seems to aggravate things. It is quite advanced though (three years without any treatment has probably not helped). 

Also after the month is up I read that you have to wean yourself off the steroid rather than come off it completely all at once. Is that true and how best to do it? I have another appointment with the specialist in three weeks so I will ask him of course.

If I don't see any result with the clob, he said that it's likely I will need a circumcision.

Thanks in advance.

 

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  • Posted

    I have never had an issue with Clobetasol. After a couple weeks of daily use I went to maintenance two or three times a week. I was surprised when I asked how long to use the Clobetasol and was told forever.

    So be it I have to deal with a health issue. Jeans hurt me in this area so I'm still trying to figure out what to wear.

    My skin condition has gotten better I can say. Keep your head up. LS can transition to cancer if not treated do keep in mind and look for any skin sores etc.

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  • Posted

    Oh Russell

    Let me suggest a moisturizer called Aquaphor healing ointment. You can buy it at Walmart in baby section.

    You were given Clobetasol ointment not cream right?

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  • Posted

    Oh dear, three years without treatment is rough going.     Give the ointment a couple of weeks to  begin to work , and also have a look at the thread,   'an experiment with Borax'.  

    I gave up with the cortisone ointment and moved over to borax about  10 months ago....   Have only had one flare up since then and the ointment sorted it in a couple of days.     

    Experience shows us that this little blighter likes change.   I have an armoury of different treatments,   Cortisione, emu oil, bicarbonate of soda, borax, coconut oil,  and hydromol       I generally use the borax, but swap about  occasionally.

    Welcome to the club no one wants to be in.

    x.  nmd

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  • Posted

    Hello Russell, sorry you have had to join us but glad did. It is not unusual for anyone to go untreated with LS for obvious reasons, so may of us had advanced conditions prior to commencing treatment. I had mine for about 6 years. One thing I would say as Mary has pointed out, if the Epiderm is not suitable, find another, as moisturising is essential. There are plenty of options but make sure it is perfume and parrabens free. Coconut oil is very good. I also use the steroid ointment just as maintainance twice weekly. Usually the itching improves quite quickly but some symptoms are more stubborn. You haven't really said what your symptoms are. If you have fusing then the Clob will not really do much. Hope it all settles for you and good luck. Also well done for your input, I'm sure there are more men out there and you may encourage others to open up.

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    • Posted

      Thank you for your advice! The symptoms are mainly soreness and redness around the urethra/frenulum area, the foreskin is redder than it should be and I can feel that phimosis (tightening of the foreskin) is beginning as well. It affects walking as it is uncomfortable when things rub against it. The soreness is made much worse by urination. I can see a little bit of skin which may be fusing, but I can't be sure. 

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    • Posted

      Hi Russell,

      Well done on finding this forum, weve all found out much more here than by any proffessional. Also, its good to know others know exactly how you feel both physically and emotionally. This disease is not one that you care to discuss over wine/beer and nibbles with friends.

      I was miss diagnosed with thrush for two years so the skin all around the vulva up to anus was sore, bright red, inflamed and had white plaques. It also itched like a SOAB and kept me awake most nights.

      I'll give you me experience re lotions and potions. I and most people are told to use the stetoid cream every day for a month, then every other day for a month then if it has calmed down and no itching or soreness - twice a week for maintenence. As well as the steroid ointment (which is much better than the cream by the way) I use a barrier/ moisturiser called HYDROMOL . Its brilliant and so soothing. That will also help protect the skin from urine.

      Following this regime the skin stopped itching straight away and the white patches went after a month i would say and never returned.

      One important thing that none of her were told but we learned on a webinar on this site is that it is essential to rub in the steroid FOR AT LEAST 90 SECONDS. It needs to penetrate the deeper inflamed tissue . Lots of us have also found sugar can cause flare ups so you could maybe keep an eye on that.

      Go commando as often as practical as this cools and 'airs' the skin .

      I hope this is of some help and that in due course the skin will greatly improve and become more supple. Let us know how you get on Russell. Good luck

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    • Posted

      Hello Russell It sounds as if you may have some fusing. I think that as long as you have symptoms then you should continue with the steroid. My Dermatologist says that until, red areas, itching, white areas or any other symptoms are present, then keep applying. Even if you have tears or splits. Again moisturising is essential. As I said before, the steroid can halt the fusing process but will not unfuse what has already taken place. Sometimes massage helps and stretching the area. As a female I use dilation which works in the same way. I hope you do not have to have surgery but circumcisions may be a good thing anyway as it is cleaner and protects you from certain bacteria. With LS, hygiene is pivotal. Good luck.
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    • Posted

      Thanks Wero. I have been using the Clob for 2 weeks now, twice a day but I have not noticed any improvement yet. My dermatologist advised using it for a month so I guess I'm only halfway through, but I was hoping to see an improvement a couple of weeks in, perhaps I will need the surgery after all. I'm a bit worried about coming off the steroid as I heard you have to do it gradually or it can make it worse than the original problem. Thanks for your advice.

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    • Posted

      Just a note Russell,

      My understanding is that I will be using Clobetasol forever for this skin disease. Even if the symptoms go away, it is necessary to continue to use Clobetasol as maintenance twice or three times a week. I don't have any negative effects using this steroid on the LS skin area, however I did spread it too far over side normal skin area and it kinda felt like a burn. So far the Clobetasol keeps the vulva skin in a normal condition.

      Good luck again in your treatment.

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    • Posted

      Russell, I must admit that the use of steroids addressed the itching very quickly for me, within days. Other symptoms were slower to respond and I still have white patches that may never go. Soreness and tears took longer. I would also re enforce what Mary has said. You should never completely stop the steroid, You will always need to use it in a maintainance dose to prevent progression of the condition and reduce the risk of flares. I have never heard that reducing or stopping topical steroids is an issue. This is only a problem with systemic steroids. In this case the doses are much higher and absoption greater. When you feel your symptoms are gone, then reducing to once or twice a week will maintain things for you. I stopped completely at my own cost and ended up back at square one. I was mortified when a lady in this forum pointed out that I would never come off the steroid cream but I am OK with this now. 
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    • Posted

      Thank you Wero & Mary. I'm just a little bit disheartened that after two weeks the area just seems a bit more sore than usual (I have never had any itching just soreness). I'll continue on with it for another week and if I do have to stop using it ill be sure to do it gradually. Thanks once again.

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    • Posted

      Just a footnote, although Clob is generally the first choice, it did not suit me at all and actually made me more sore. I went through 3 differenet steroid treatments and ended up with Betnovate which is brilliant for my skin. Please don't get dispondent, you will find the right teatment but sometimes it is trial and error as we all respond differently. Take care.

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    • Posted

      Hi Russell

      Although Dermovate stopped itching immediately for me , it took about a month to 6 weeks to get rid of the white plaques and soreness. My skin is in good condition and has been for years now but when I have attempted to stop the steroid altogether within a week i have the tell tale tingling that preceeds the full on itching. I have resigned myself to always having to maintain with twice weekly application and daily use of barrier ointment Hydromol.

      Are you using a barrier ointment now ? Are you still using ordinary shower gel ? Anything with perfume or parabens will keep area sore, it did with me anyway. I use Aveeno body wash and am ok with that but some are allergic to it. Maybe change your detergent to one that is used for babies or sensitive skin?

      Maybe like Wero you may need to change steroids ? When is your next appt with dr/consultant ?

      Keep up your spirits Russell, you will get there some times unfor th unfortunately its via the 'scenic' route. Its a pain having to make changes here and there but when you see the symptoms subside then the relief far outweighs the frustration.

      Keep us updated and let us know if we can help in any way with any queries or just support. Take care

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    • Posted

      Thanks, that's very interesting. I'm not using the barrier cream but I am using E45 instead of shampoo/shower gel. I'm very careful not to get any soap in the area when I wash.

      It may be that I need a different steroid as the clob has made it sorer than it normally is. As I can't tolerate the barrier cream I think the most likely advice the doctor will give me is to have a circumcision when he sees me in two weeks.

      Apparently this has a 75% success rate in men with the condition although it's a very unpleasant operation. Thank you for the kind advice, the people here are wonderful! 

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