Newly diagnosed and confused over treatment for lichen sclerosus

Posted by ronag @ronag, Jan 24, 2023

I've been diagnosed with lichen sclerosus. I have questions as to what is the best treatment: which steroid and at what dosage. My gynecologist initially prescribed mometasone cream 0.1% twice a week. This didn't really control the itching. My dermatologist is recommending clobetasol ointment 0.05% once a day for 2 months, followed by twice weekly forever. Itching, while not completely gone, is certainly more controlled after a week's treatment with the clobetasol. However, I'm a bit concerned over using it daily for 2 months. Can you please share what's worked for you? Can I expect to be using a steroid for life? To throw into the mix--I have long covid. Thank you for any help in navigating this.

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Profile picture for echapman @echapman

I was advised not to use anything not specifically designed to treat LS symptoms. That would disqualify emu as it wasn't made for LS. I stick with my Lisepten. It works. Why should I try anything else.

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As I stated before … just sharing my experience. You do you!! I will do what works best for me and has proven results. I’m not on here advocating any certain cream or ointment. Always clear anything with your doctor…which I did with Emuaid.
Thanks
Sharon.

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What is Lisepten? I haven’t heard of it.

How do you use EMU oil & which one?

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Did you get an answer? I’ve had it for years, ignored it and it keeps spreading. A gyn has a method with radiofrequency after clobetosol, then PRP. She retired so I never got the treatment. Place in Pensacola FL, Coyle Institute, has a different method using laser. Would love to know anyone who tried these methods or different. My derm said use Elliquel. Thanks!

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Profile picture for hopefulme3 @hopefulme3

What is Lisepten? I haven’t heard of it.

How do you use EMU oil & which one?

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I have using EMU OIL for years with great success. It gives almost instant relief and, in a few days, it is in remission. It will keep in the fridge for years. I always have it on hand at room temperature for the next flareup. I only but Pure Refined Purple Emu Oil and I buy
it on line. You apply it with your fingers and it gives wide silky coverage. I tried Emuaid in the past. Although it is a very good cream and gave short term temporary relief, it did not heal the way Pure Emu Oil does.
Good luck on your journey

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Profile picture for joybringer1 @joybringer1

I have had LS for over 10 years. For itching, I took hydroxyzine 25 mg every 8 hours as needed. I no longer itch, I just burn, I use Premarin cream 1 gr twice a week and Halobetasol Propionate ointment 0.05% twice a week. With flares, I use more of each of these beginning with twice a day for two weeks then once a day for two weeks. I also take Amitriptylin 25 mg at bedtime. For numbing, I am currently using a compounded cream every 3 hours. In the past, I used Lidocaine 5% for numbing and that is included in my compounded cream at 6% along with Aquaphor ointment. You have my deepest sympathy for having this new disease added to your long Covid. With all good wishes, @joybringer1.

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@joybringer1
I am using clobetesol 2x daily. I just started. I originally told my dermatologist the only thing that helped was Vagisil which has lidocaine in it. She told me to not use it. It is causing too much inflammation. You use lidocaine with clobetesol??

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I am using clobetesol 2x daily. I just started. I originally told my dermatologist the only thing that helped was Vagisil which has lidocaine in it. She told me to not use it. It is causing too much inflammation. You use lidocaine with clobetesol??

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