Clobetasol

Yes I have the ointment - thank you for the Aquaphor suggestion.

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. 

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

Thank you Caroline - that's very useful information!

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.

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.

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.

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. 

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.

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.

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

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!