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 dorothy314 @dorothy314

I am new to LS diagnosis. Can you all explain how coconut oil can work instead of a super strong steroid? What exactly is the steroid doing-reducing inflammation? Is the steroid cream preventing cancer? Can the coconut oil achieve the same thing? My dr. gave me literature that specifically said to not use anything else...no moisturizers, no other creams-just the steroid. Also there were instructions about not washing everyday and when I do wash only use water. I appreciate each of you for your help. This is quite a bit to learn about. Thank you all so much!

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MD's are trained in pharmaceuticals so that will always be their first recommendation. Coconut will do no harm unless you are allergic. Most moisturizers have multiple ingredients and could be irritating.
Organic pure coconut oil is gentle with healing properties.

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Profile picture for ronag @ronag

Thank you Willows. Did you start with twice a week right off the bat, or did you have a more intense treatment (ie daily) initially? And if the latter, for how long? My gynecologist and dermatologist have two very different approaches and I'm not sure whom to follow. Thanks for your help.

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Hi I got officially diagnosed when I guilted my dermatolgist in to taking a plug of skin to do a biopsy. Up in till now neither my gynecologist and dermatologist were taking this seriously. Skin cancer runs in my family so any skin affliction I take seriously. At first they were handing the problem off to each other with the gynecologist telling me, with no diagnoses, to find a cream at the drug store to help the itching. Definitely changing gynecologist. So long story short I have been living with this for 5 years with literally no help. At first it was raging. So I started taking supplements to help the immune system and everything is in check except the five years of scarring. I take Vitamin C, Lysine, Tumeric, Ashwagandha, (Oregano Oil, Black Seed Oil, Garlic Extract, Elderberry Combo).

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I have used EMU OIL for several years with almost immediate relief and after a few days it has disappeared

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Profile picture for bethdoraine @bethdoraine

I have used EMU OIL for several years with almost immediate relief and after a few days it has disappeared

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I'll try anything, LOL

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Please keep me in the loop and let me know how this works for you. I don't know what I would do without Emu Oil. Wishing you well

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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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Diagnosed with LS almost ten years ago. I started with the Clob but switched to Emuaid as I felt I didn’t want the side effects of the Clob. The Emuaid is a dream! I still use the Clob…VERY VERY little and maybe once monthly for just maintenance. Emuaid is worth every penny. My grandson had Hidradenitis Suppurativa. He applied the Emuaid every day, two to three times daily, The boils dried up and after two-three months were gone. He applies twice weekly for maintenance and nothing has come back. Miracle ointment!

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Profile picture for sap52203 @sap52203

Diagnosed with LS almost ten years ago. I started with the Clob but switched to Emuaid as I felt I didn’t want the side effects of the Clob. The Emuaid is a dream! I still use the Clob…VERY VERY little and maybe once monthly for just maintenance. Emuaid is worth every penny. My grandson had Hidradenitis Suppurativa. He applied the Emuaid every day, two to three times daily, The boils dried up and after two-three months were gone. He applies twice weekly for maintenance and nothing has come back. Miracle ointment!

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@sap52203 Where did you learn about emuaid and is your doctor OK with it?

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@sap52203 Where did you learn about emuaid and is your doctor OK with it?

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Using Clob “forever” was daunting considering the possible side effects. I ran across Emuaid while researching options. I started using it and at my first doctor appointment three months into using Emuaid, my doctor commented on how well the Clob was keeping the scarring down. Hmmmm so I told her I had not used it in the last three months as I had been using a product called Emuaid. I told her it also reduced the itching I was experiencing. She said she had no issue with me continuing on the Emuaid as everything looked good down there. I’ve been using it ever since…and will continue.
Recently had a UTI and saw a doctor in the nearby Urgent Care. I asked her to check my LS. She said she only saw a small white patch and that was all. 👍

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@sap52203 Where did you learn about emuaid and is your doctor OK with it?

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I think I need a specialist who knows how to tx the lichen with an underlying Coup de Sabre (type of sclerotic skin). I’m in southern Ca Inland Empire and have spent almost 2 years until someone actually diagnosed my lesions. Not certain all we’re doing is the best treatment. Advise please!?

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