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.
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.
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.
Hallo Russell, es tut mir leid, dass Sie uns beitreten mussten, aber ich bin froh, dass Sie es getan haben. Es ist nicht ungewöhnlich, dass jemand mit LS unbehandelt bleibt, aus offensichtlichen Gründen, viele von uns hatten fortgeschrittene Zustände, bevor sie mit der Behandlung begannen. Ich hatte es etwa 6 Jahre lang. Eine Sache, die ich sagen würde, wie Mary bereits erwähnt hat, wenn Epiderm nicht geeignet ist, finden Sie eine andere, da Feuchtigkeitspflege essenziell ist. Es gibt viele Optionen, aber stellen Sie sicher, dass es parfüm- und parabenfrei ist. Kokosöl ist sehr gut. Ich verwende auch die Steroid-Salbe nur zur Erhaltung zweimal wöchentlich. Normalerweise verbessert sich der Juckreiz recht schnell, aber einige Symptome sind hartnäckiger. Sie haben nicht wirklich gesagt, welche Symptome Sie haben. Wenn Sie eine Verschmelzung haben, wird Clob nicht viel ausrichten. Ich hoffe, dass sich alles für Sie beruhigt und viel Glück. Außerdem herzlichen Glückwunsch für Ihren Beitrag, ich bin sicher, dass es dort draußen noch mehr Männer gibt und Sie könnten andere ermutigen, sich zu öffnen.
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.
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
Hallo Russell, es klingt so, als könnten Sie möglicherweise einige Verschmelzungen haben. Ich denke, dass Sie, solange Sie Symptome haben, mit dem Steroid weitermachen sollten. Mein Dermatologe sagt, dass Sie, bis rote Bereiche, Juckreiz, weiße Bereiche oder andere Symptome vorhanden sind, weiterhin anwenden sollten. Selbst wenn Risse oder Spalten auftreten. Wieder ist Feuchtigkeitspflege entscheidend. Wie ich bereits sagte, kann das Steroid den Verschmelzungsprozess stoppen, aber nicht das, was bereits stattgefunden hat, rückgängig machen. Manchmal hilft Massage und das Dehnen des Bereichs. Als Frau verwende ich Dilatation, die auf die gleiche Weise wirkt. Ich hoffe, dass Sie keine Operation benötigen, aber eine Beschneidung könnte ohnehin eine gute Sache sein, da sie hygienischer ist und Sie vor bestimmten Bakterien schützt. Bei LS ist Hygiene entscheidend. Viel Glück.
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.
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.
Russell, ich muss zugeben, dass die Verwendung von Steroiden das Jucken bei mir sehr schnell, innerhalb von Tagen, gelindert hat. Andere Symptome haben länger gebraucht, um zu reagieren, und ich habe immer noch weiße Flecken, die möglicherweise nie verschwinden werden. Schmerzen und Risse haben länger gedauert. Ich möchte auch das, was Mary gesagt hat, unterstreichen. Sie sollten das Steroid niemals komplett absetzen. Sie werden es immer in einer Erhaltungsdosis verwenden müssen, um den Fortschritt der Erkrankung zu verhindern und das Risiko von Schüben zu verringern. Ich habe noch nie gehört, dass das Reduzieren oder Absetzen von topischen Steroiden ein Problem ist. Dies ist nur ein Problem bei systemischen Steroiden. In diesem Fall sind die Dosen viel höher und die Aufnahme größer. Wenn Sie das Gefühl haben, dass Ihre Symptome verschwunden sind, dann wird das Reduzieren auf einmal oder zweimal pro Woche die Dinge für Sie aufrechterhalten. Ich habe komplett aufgehört, zu meinem eigenen Nachteil, und landete wieder am Anfang. Ich war entsetzt, als eine Dame in diesem Forum mir darauf hinwies, dass ich nie von der Steroidcreme abkommen würde, aber damit bin ich jetzt einverstanden.
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.
Nur ein Nebensatz, obwohl Clob im Allgemeinen die erste Wahl ist, hat es mir überhaupt nicht gepasst und mich tatsächlich noch wund gemacht. Ich habe drei verschiedene Steroidbehandlungen durchgemacht und bin schließlich bei Betnovate gelandet, das für meine Haut brillant ist. Bitte sei nicht entmutigt, du wirst die richtige Behandlung finden, aber manchmal ist es eine Frage von Versuch und Irrtum, da wir alle unterschiedlich reagieren. Pass auf dich auf.
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!