flare up Lichen Sclerosus

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I was diagnosed with LS last April. I am 48 and also have hypothyroid and Alopecia Areata Totalis and was told it was linked to having those auto immune conditions. Once I started clobetasol ointment and oestrogen pessaries my symptoms became well controlled. However since last December I have had hardly a day symptom free, usually mild itching in the morning or if I forgot to moisturise. However some fare ups have been particularly bad and I am experiencing one at the moment, constant needle type itching, sore red skin. I have tried diprobase ointment, cetroban ointment, emu aid, I only use aqueous cream or e45 wash (never soap) to wash with.

i have read some posts recommending Hydromel. What is that and do you need a prescription?

I have just listened to the webinar by Dr Goldstein and wondered whether I haven't rubbed in the steroid cream for long enough. I had been applying it twice a day as it got so bad but stopped the past few days as I worried that the flare up was caused by overuse.

Any body have any suggestions? The discomfort is hard to live with.

thanks

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  • Posted

    Shelia, my new dermatologist who is suppose to be the expert suggested Sitz baths twice a day and then application of the steroid ointment- well I found the ointment actually created more discomfort - I was afraid of over use also - I gave up on the steroid- I found the only thing that elimated the burning and stinging was cold water - so I have taken one of the methods used in sports medicine and am using a sitz bath with cold water then applying either the antibiotic ointment or Vaseline - I have also purchase a spray attachment for my shower to apply cold water washes. In sports inflammation is treated with the application of ice - so my cold water treatment diffently reduced the burning and stinging from the steroid - doctors don't understand that people are different and are not able to follow the recommended treatments- still looking for that post menopausal doctor that suffers with this - if anyone knows one let me know - my new dermatologist is in the prime of her life !!!! ??

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  • Posted

    Hi Hydromol is an emolument like diprobase. Lots of us find it gives us the most comfort. If your in the uk you can either get it on prescription, buy it from boots or on the internet.Make sure you get ointment not cream.

    If your worried about over use of a steroid you could try a less potent one or there is another cream called protopic (prescription only) which is an immune suppressant cream.

    Also big trigger for me is alcohol in perticular wine. I think it's a sugar/fructose thing.

    Another lady on here takes msm flakes I've not tired this yet but the information on the net looks interesting.

    Hope you get some comfort soon

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    • Posted

      Thank you for the advice Justine. I wondered about alcohol as I have had more wine recently as away on holiday and it might explain the flare up I had over Christmas, though I don't drink much generally

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  • Posted

    Hi Sheila. I have recently had quite q bad flare up and after reading advice on this site I now wash in hydromel ointment and use epimax cream, which I presume is the same principle of epiderm ointment etc.  I also have osteogen pessories which to be honest I do not use as regular as I should, but I have found great relief using this method 
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    • Posted

      Hi Pat, can I just draw attention to something I've recently become aware of; There's Epiderm and Epaderm, very confusing I know. Epaderm (with an A) is the one that you can buy over the counter and use as a soap substitute. The ointment comes in a big tub. It's what I use and find very good. Epiderm is quite a strong skin cream and I think, but am not sure, that it's prescription only and has quite specific uses. I did look it up but have forgotten the details as it wasn't relevent to me. Be careful when reccomending as it's easy to type the wrong thing...

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    • Posted

      Thank you for pointing this out because I am off to drs later today and did not want to recommend the wrong ointment for myself
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  • Posted

    Hi,

    please dont be worried about overuse of steroid. I used it for 5 years. I'm in no way saying this is what everyone should do. All I'm saying is I have had no effects whatsoever from too much use and neither has my finger. It is really important to get it under control. Bi carb/salt baths are excellent. I haven't used clobetesol for about 12 months now. I also use paw paw ointment - good luck 

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    • Posted

      Thank you. I have also realised that the clobetasol I have been prescribed is cream not ointment as Dr Goldstein in his webinar says it must be ointment so am wondering if that would make a difference.

      Have you listened to the webinar? As he says to never stop using the steroid cream even if symptom free the disease is still active.

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    • Posted

      It was a white cream. When I started to wean off it - and I was totally paranoid to do it - I would just use if I thought there was a flare up happening. My major cause was always stress - whilst I'm not a stress head I worked in a stressful environment. It helped chucking that in too! I really think whatever you can do to be relaxed and diligent in the bathing, etc down there you'll be ok - there is light at the end of that tunnel 😘

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    • Posted

      In Australia you can get it in any of the major shopping outlets or chemists
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