I would be pleased to receive feedback of the use of Der...

Hi there , I was given Dermovate and I too am worried about the long term use of it !.

If it won't cure it ..which it won't ,then why do we have to risk thinning of the skin by using it .Surely this will give us more problems of the skin ?.I have been told by the hospital to use it everyday for 6 months ( my next appointment ) I am only going to use it IF I really HAVE to.I went to my GP and was told to use it for a couple of weeks and then leave it off and then use it after about a month.I have found that it stings me antway.

I have used KY jelly and just this week I've tried olive oil.

I think a lot of the burning comes from being too dry.

As for any mum or dad thet RUBS anything onto the area ...please DONT RUB !!.JUST PAT REALLY GENTLEY WITH COTTONWOOL.As fellow sufferes know it kills to rub it !and only makes it ich and burn more.

I have also noticed that if I eat peppers, in a meal, my anus stings like mad....this is why I tried the olive oil ...and it worked.

[i:92f9fc9ef9]This message was automatically imported from the original Patient Experience[/i:92f9fc9ef9]

Thanks for the reply. Peppers!, interesting for me because I eat tons of peppers. I have tried the Dermovate, reluctantly, for the last couple of weeks, week 1 everyday and week 2 alternating and will now take a break from it. There is some improvement but as well am worried about the thinning aspect of it as I seem to be getting enough thin skin without making it worse. I'll have to watch my intake of peppers, thanks:D

[i:212829132f]This message was automatically imported from the original Patient Experience[/i:212829132f]

:idea: I find the National Lichen Sclerosus Support Group website so helpful. It's at www.lichensclerosus.org

:idea: One of the links from the above NLSSG site is to New Zealand's dermatologists website. I found the section on topical steroids really good at www.dermnetnz.org/treatments/topical-steroids.html

Hope this helps

Marta

Many thanks, I will check these out, Helen

Have used dermovate for about 5 years now, very successful in controlling itching and I suppose in thinning skin that has thickened and become pale. I see consultant regularly, I use dermovate every 3 days at mo but have had phases of using it once a week. Currently am trying betnovate each day, less strength but increase quantity, ie daily. Have dermovate up til now excellent. Was afraid of strong steroid cream but was reassured by consultant.

I have had this condition for 4 years and dermovate stopped the skin from tightening up and reduced itching, it doesn't cure it and about 2-3 times a month I have to use a small amount just to keep everything comfortable. biggest issue is the skin apperance which when comfortable is white and unpleasant for anyone to look at. If i wash with soaps it causes redness and irritation which funnyenough makes the skin look 'normal' again, I sometimes use a mild over the counter steroid to reduce this redness back to the unpleasant but white appearance. hope this is of some help? [quote:55f262cf45=\"H.\"]I would be pleased to receive feedback of the use of Dermavate. Is it really successful for LS? Has anyone experienced any problems with it? The leaflet says it is a steroid and there is a need to be careful of long term use due to thinning of the skin. Has anyone experienced thinning of the skin with its use? Does anyone use it regularly or just now and then. Has anyone used it for a long time with great success? Can they now stop using it and symptoms no longer return? Has anyone experienced LS stopping, never to return? Does anyone know at what stage it stops becoming a problem or is it forever?

Any feedback welcome please.

[i:55f262cf45]This message was automatically imported from the original Patient Experience[/i:55f262cf45][/quote:55f262cf45]

Hi - I am Fabia and I run the National Lichen Sclerosus Support Group and I am so pleased to see that Marta finds the site helpful. I plan to put more information on soon!

The question asked here is one of the most frequently asked questions! I just do not know where the rumour started about being so afraid of steroid ointments. I have recently attended several medical conferences where the doctors say that Dermovate has a 90% (that is 9 out of 10 women) success rate in reducing symptoms and getting them under control, so surely its worth putting fear aside and giving it a try? I have been using it for 13 years and I have a complicated case of LS but Dermovate has been my salvation and has saved my sex life. It has helped so many of the women who contact NLSSG that I cannot tell you how many. In 10 years of running the group I estimate that well over a quarter of a million people have been in touch with NLSSG either via website, letter, email or phone and very few of them report thinning of the skin. I do hope this will help you and give everyone confidence to use their Dermovate.

I'd just like to say that I am 14, had LS since I was 4 - and didn't find the website helpful at all. It was a bit confusing too, and didn't really apply to other forms of it too. Which was kind of disappointing.

But I am glad there is something out there, better than nothing I suppose.

I was diagnosed about 8 months ago. I over-used Dermovate. My LS is under control, but I have developed red lesions at the entrance to the vagina. My gynae is not sure if these are caused by the LS or by overuse of the Dermovate. So BE CAREFUL. Dermovate is great, but treat it with respect. I am now on Betnovate, which for me works just as well. Gynae also told me that LS is for life, and while not curable, is manageable.

I have only recently been diagnosed with LS, so don't have much experience. However, I was at the hospital today and voiced my concerns about the steroid aspect of Dermovate to the doctor, when he told me that I will have to carry on using cream for the foreseeble future.

He is going to write to my GP and say that when I request a repeat prescription for cream, when the Dermovate I have is used up, they should prescribe something milder that will keep the symptoms at bay but has less steroid.

Hope that helps.

Sarah

I was diagnosed in Jan this year with LS and the pain and itching has been horrendous. I was given dermovate to use but after a couple of days I felt it was getting worse. I was then given Nerisone and that was worse. After patch tests it's been found that I'm allergic to steriods. GREAT! all treatments for LS have steroids in. I'm going to try Aqueous cream and see if that helps. I use Aloe Vera gel to cool it down.

Hope to speak more

from a very sore and itchy

Tracie

I have used steroid creams if only sparingly I use it if i get a flareup which i might add has been very infrequent latley . reading this blog I would say that if you are dry skinned and cracking,/itching then wash with nothing but a aqueous cream from your chemist ,use unscented carefree mini pads so that the soap powder from your undies wash does not touch your skin and I use paladin or palomar creams fron rashcream.com. the non chemical cream barriers against wetness , soothes itching and heals cuts and constant use after washing keeps you supple and soft.......These things have worked for me and although it is not a cure you can at least live a little easier day to day

Hi I have been using dermavate for about 6 years now, it does help, at first I was using it everyday for about 6 weeks and noticed a diffrence in about 2 weeks. I now only use it about once every 3 weeks to keep it a bay. I have suffered for 21 years with this condition but was only diagnosed 6 years ago. I was given more prescriptions for thrush untill I insisted on seeing a specialist, now I am at ease not crying everyday like I was before. Just a note to say that my Mother who is 78 has been diagnosed with this condition and it looks like my 4 year old Grandaughter has just started with this, the doctor has given her a fungus cream but it does not seem to be working so I am keeping a close eye on her (poor soul)