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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | Aug 5 4:21pm

In reply to @sujett "I think I need a specialist who knows how to tx the lichen with an underlying..." + (show)

@sujett you can try contacting one of the following organizations:
NORD, National Organization for Rare Diseases https://rarediseases.org/
Or GARD, Genetic and Rare Diseases. https://rareddiseases.info.nih.gov/
The 2 organizations keep a list of physicians whose speciality is rare diseases. They may or may not have names in your area, but you could always drive!
Because of all the changes in Washington, DC., the organizations may not be fully staffed.
Will you contact one of the organizations and let me know what you find out?

lindatucson | @lindatucson | Aug 6 12:13am

In reply to @sap52203 "Using Clob “forever” was daunting considering the possible side effects. I ran across Emuaid while researching..." + (show)

Where are you getting the Emu stuff?

brandysparks | @brandysparks | Aug 6 5:46am

In reply to @becsbuddy "@sujett you can try contacting one of the following organizations: NORD, National Organization for Rare Diseases..." + (show)

@sujett - Just jumping in here, and have posted about my LS / VIN II/III (="this condition") journey here on Mayo Clinic Connect (if you'd want to do a search on this site), but I have a very good gynecologic oncologist who is seeing me usually every 2 - 3 months for the lesions that arise still from this condition.

Having found a lesion on our last visit ~1 month ago, I am back on Imiquimod 3x/week, with Clobetasol propionate 0.05% ointment on the other days til I see her end of Sept. If the lesion is not gone, will have to undergo my second excision, and it is near the urethra, closer than any have ever been, so I'm concerned about it messing with the urine flow when I urinate.

BUT, I have not had issues with the Clobetasol. As you may see in my previous posts, we did initially find 3 lesions and I had to undergo laser ablation of the vulva in Feb. 2024. That was excruciating, unrelenting pain for 7 weeks. Nothing except vasoline, a bit, provided relief, and urination was excruciating. So, I hope you may be able to find a good gynecologic oncologist who can monitor your condition and keep it under control.

Let me know if I can help by sharing any other experience with this condition. I'd been periodically treating LS with an ointment, per my gynecologists' advice (had several different ones as I've lived all over the country) since it was diagnosed in my early 20s, and now 40+ years later it has turned into this VIN (Vulvar Intraepithelial Neoplasis) II/III precancerous condition.

I certainly hope of course that it doesn't evolve further.

Best wishes, and do look into any gynecologic (pre)cancer reading you can do through the NIH, Lichen Sclerosus nonprofits, etc.

brandysparks | @brandysparks | Aug 6 5:50am

In reply to @2thfairy "I’ve had LS for over 20 years. The newer thinking is that steroid creams only dry..." + (show)

@2thfairy - I just posted, but am looking back at previous posts, and see yours. I will bring this up with my gynecologic oncologist via their hospital portal messaging center to see what she thinks.

Wonderful to hear you've had no further lesions! Thank you.

sap52203 | @sap52203 | Aug 6 8:21am

In reply to @lindatucson "Where are you getting the Emu stuff?" + (show)

I buy it on the Emisid website. It’s rather costly but I’ll sacrifice a couple dinners out to buy it. Lol
I’m not advocating anything for others… just sharing what works for me. Always follow your doctors orders, especially if they are familiar with the LS and treating it. Find one that knows what it is and how to treat it for the optimal health of yourself.

lindatucson | @lindatucson | Aug 6 11:12am

Which product type, I see there are several are you buying?

sap52203 | @sap52203 | Aug 6 1:22pm

In reply to @lindatucson "Which product type, I see there are several are you buying?" + (show)

The Emuaid Max and/or regular in the jar.

echapman | @echapman | Aug 7 6:05am

In reply to @becsbuddy "@sap52203 Where did you learn about emuaid and is your doctor OK with it?" + (show)

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.

barbarasolinski | @barbarasolinski | Aug 7 5:37pm

In reply to @sap52203 "The Emuaid Max and/or regular in the jar." + (show)

I use it and have had luck with it. It's available through Amazon I think.

npandolph | @npandolph | Aug 7 7:38pm

In reply to @joybringer1 "I have had LS for over 10 years. For itching, I took hydroxyzine 25 mg every..." + (show)

LS can calm down and you won’t need medication. A specialist prescribed me a compound Gabapentin 6%/Hydrocortisone2%/Baclofen2%/Lidocaine2% cream. Great for pain relief.