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Lichen Sclerosus Treatment Series Part 1: Steroids

Lichen Sclerosus Treatment Series Part 1: Steroids

Introduction

“You have lichen sclerosus. It’s considered autoimmune. You are at a slightly higher risk for developing vulvar cancer. There is no cure. Apply your steroids daily”.

When I was diagnosed with LS, that is all the information and guidance I got from my general physician. “Apply your steroids daily” is vague and unhelpful. “How many times a day”, I wondered, “and where and how should I be applying the medication”? 

Many of us aren’t given information about our treatment plan when we are diagnosed. Your treatment plan is one of the most fundamental pieces with respect to managing your symptoms, slowing the progression of the disease, getting into remission, and reducing your chances of developing vulvar cancer. 

So where is this information if the doctors do not give it to us?

Part One of Ongoing Lichen Sclerosus Treatment Series & Disclaimer

Well, I’ve spent the better part of two years using my background in research and science to dive through the medical literature and learn from the experts via webinars, conferences, and speaking engagements. In order to bring more evidence-based information and education to the LS community, I will be doing a treatment series here on the blog where I review various treatment options and what the science says about them.

In this post, I will start with ultrapotent topical corticosteroids (steroids for short). It will be a two-parter, so make sure you come back for more! Today I share what lichen sclerosus is, why steroids are the gold standard treatment, what version is best, how often you should use them, and the best practice for the application. In the next post, I will review different side effects that *may* accompany steroid use and what you can do if they happen to you. 

*This post is evidence-based; I draw on the medical literature to share what you need to know about steroids and lichen sclerosus. Importantly, what I share is my interpretation of the science and data.

What is Lichen Sclerosus

Before I dive into lichen sclerosus treatment, I need to say a couple of things about what LS is.

Lichen sclerosus is a chronic, inflammatory skin disease that primarily affects the genitals (e.g., the vulva, the penis, and/or the anus). In some cases, it can affect non-genital skin such as the chest, abdomen, and thighs. 

Lichen sclerosus is widely considered to be an autoimmune disease. It may have a genetic component, although researchers are still investigating this. 

Lichen sclerosus is a progressive disease, and, if left untreated, symptoms will typically worsen over time. Therefore, it is important to treat the local inflammation behind lichen sclerosus to keep symptoms at bay and keep the disease from progressing. 

Signs of lichen sclerosus include but are not limited to: hypopigmentation of the skin (the skin may appear white, grey, or ashy as if it’s losing its pigmentation), scarring/fusing (e.g., clitoral phimosis, labial adhesions, etc.), and skin that looks waxy, thickened, or like cigarette paper. Symptoms include but are not limited to: pain with sex, itching, tearing with sex, fissures, cuts, sores, etc.

This is the Coles Notes (i.e., super brief) edition. If you want to learn more about LS or if you prefer video format, check out this video explanation below.

Why are Ultrapotent Topical Corticosteroids First-Line Treatment

Steroids are considered the gold standard of LS treatment and are usually the first treatment to be prescribed.

The reason they are the first-line treatment is because they are unmatched in their ability to reduce inflammation. Remember what I said about inflammation above! Yup, all those nasty symptoms and architectural changes all happen because of the inflammation caused by LS. Therefore, it’s key to use a treatment plan that has demonstrated in multiple studies the ability to significantly reduce the inflammation caused by LS. (Bracco et al., 1993, Bornstein et al., 1998, Funaro et al., 2014, Goldstein et al., 2011, Krapf et al., 2020, Lee et al., 2015, Mautz et al., 2021 Terras et al., 2014).

That is, of all the comparative randomized controlled clinical trials, steroids are the best at reducing symptoms, controlling and slowing the progression of the disease, and getting the patient into remission.

Further, there is evidence supporting steroids reducing the likelihood of vulvar cancer (Lee, Bradford, and Fischer, 2015). To date, only steroids seem to support this.

Should You Use the Cream or Ointment Version of Your Steroid

Image of a meme where a person with brown hair is looking stressed and wiping the sweat off their brow. Above them are two buttons, one says cream the other says ointment, as steroids for LS are typically prescribed as either ointment or cream.

Ideally, one would use the steroid ointment instead of the cream. The main reason is that cream versions of the steroid contain alcohol in the base. This means it can sting and irritate the vulva on application – especially if you have open cuts or sores.

Think about it this way. Have you ever had a paper cut on your finger and then got lemon juice or rubbing alcohol in the cut? Yeah! It burns a lot. That can happen on your vulva too if there is alcohol in the base and you have fissures.

If you want more information on all the differences between the cream and the ointment and why the ointment is preferred in the LS medical community, click this link.

How Often Should You Use Your Steroids

There are a couple of general protocols for steroid application for lichen sclerosus documented in the scientific literature. The first, which is more commonly practiced in North America is by Lewis et al., 2018.

This protocol states patients with vulvar LS sclerosus are to apply their steroid medication:

First month: 1x a day. 

Second month: 1x every other day. 

Third month (maintenance protocol): 2x a week 

The maintenance protocol is to be followed for life.

The second general protocol comes from the 2021 European Guidelines which recommends patients apply their steroids daily for the first 3 months. After three months, a maintenance regime is followed whereby patients will apply 1-2 times per month or 2-3 times per week, depending on the case.

Caveats

Now, there are some VERY important caveats I need to flag here.

Caveat #1

This is a general protocol. If your doctor gave you a different protocol, please follow it. If you’re concerned about the protocol they gave you, have a conversation with them about why they deviated away from the standard dosing schedule. There may be a good reason for this. Because this is a general protocol, this may not work for everyone. Some folks need more time on the 1x a day before they can tapper down to every other day. Others can move into maintenance after one month of daily because they responded rapidly to treatment. Please remember that we are all different, and therefore it’s not uncommon for many of us to slightly deviate from that schedule. 

Caveat #2

This protocol can differ depending on where you are located in the world. There are some countries that have patients stop steroids once they get into remission. This is a decision that you should make in conjunction with your healthcare provider. Personally, I choose to continue to use my steroids as there is good evidence supporting the use of steroids on a maintenance dose to help keep inflammation at bay and reduce the risk of developing vulvar cancer. Of course, always do your research; this is just my personal choice based on the scientific literature that we have at this point. 

Image of a tube of Clobetasol steroid ointment.

Caveat #3

Dr. Gayle Fischer, a leading LS researcher and dermatologist based in Australia customizes one’s dosing schedule and the potency of the steroid based on the severity of LS and how the patient responds. She’s not the only doctor to take this approach – some doctors in the UK and other areas of the world have a similar approach. 

Ideally, your doctor will tell you how often and where to apply. In the beginning, ideally, they will have you back after 3 months of treatment to re-assess and potentially readjust your application. 

Caveat # 4

The goal of steroid treatment is to get patients into remission and onto a maintenance dosing schedule. You are not meant to apply the medication daily for life.

The Optimal Way to Use Your Steroids, According to Top LS Specialist and Vulvovaginal Specialist, Dr. Jill Krapf

If you are wondering, “OK, what’s the best way for me to apply my steroids to ensure optimal results”, Kathy from Lichen Sclerosus Podcast has got you covered.

Kathy did a phenomenal interview with Dr. Jill Krapf on her podcast, and, in the middle of the episode, Dr. Krapf shares the best way to apply your steroid for optimal results. Anecdotally, I know this technique has been a game-changer for so many folks with LS. Read the blog post on how to apply your steroids here and stay tuned for Kathy's podcast video coming soon.

Conclusion

In part two I will be discussing the side effects of topical corticosteroids. That will go live in two weeks. Be sure to sign up to our newsletters below so you do not miss that post!

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Reach Out to Me

Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content I can be reached via:

Email: Jaclyn@lostlabia.com

DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.

Support Resources

FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.

Feel free to book a 1:1 call with me if you are struggling with grief and emotions. Simply click on this link to learn more about lichen sclerosus peer support calls.

Image of a person with dark brown skin and dark hair wearing a yellow shirt sitting at a desk on a call. The title text reads, "1:1 LS Peer Support Calls, book now".

LSSN Membership – sign up here.

For a more detailed list of free and paid support resources, check out my LS resources page here.

Sources Cited

2021 European Guidelines

Bornstein, J.; Heifetz, S.; Kellner, Y.; Stolar, Z.; Abramovici, H. Clobetasol dipropionate 0.05% versus testosterone propionate 2% topical application for severe vulvar lichen sclerosus. Am. J. Obstet. Gynecol. 1998, 178, 80–84.

Bracco, G.L.; Carli, P.; Sonni, L.; Maestrini, G.; De Marco, A.; Taddei, G.L.; Cattaneo, A. Clinical and histologic effects of topical treatments of vulval lichen sclerosus. A critical evaluation. J. Reprod. Med. 1993, 38, 37–40

Corazza M, Schettini N, Zedde P, Borghi A. Vulvar Lichen Sclerosus from Pathophysiology to Therapeutic Approaches: Evidence and Prospects. Biomedicines. 2021; 9(8):950. https://doi.org/10.3390/biomedicines9080950

Funaro, D.; Lovett, A.; Leroux, N.; Powell, J. A double-blind, randomized prospective study evaluating topical clobetasol propionate 0.05% versus topical tacrolimus 0.1% in patients with vulvar lichen sclerosus. J. Am. Acad. Dermatol. 2014, 71, 84–91. 

More Citations

Goldstein, A.T.; Creasey, A.; Pfau, R.; Phillips, D.; Burrows, L.J. A double-blind, randomized controlled trial of clobetasol versus pimecrolimus in patients with vulvar lichen sclerosus. J. Am. Acad. Dermatol. 2011, 64, e99–e104.

Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Women's Health. 2020 Jan 15;12:11-20. doi: 10.2147/IJWH.S191200. PMID: 32021489; PMCID: PMC6970240.

Lee A, Bradford J, Fischer G. “Long-term Management of Adult Vulvar Lichen Sclerosus: A Prospective Cohort Study of 507 Women”. JAMA Dermatol. 2015 Oct;151(10):1061-7. DOI: 10.1001/jamadermatol.2015.0643. PMID: 26070005. https://pubmed.ncbi.nlm.nih.gov/26070005/ 

Lee, A. and G. Fisher (2018). “Diagnosis and Treatment of Vulvar Lichen Sclerosus: An Update for Dermatologists”. American Journal of Clinical Dermatology. DOI/10.1007/s40257-018-0364-7 https://pubmed.ncbi.nlm.nih.gov/29987650/ 

Lewis FM, Tatnall FM, Velangi SS, Bunker CB, Kumar A, Brackenbury F, Mohd Mustapa MF, Exton LS. British Association of Dermatologists guidelines for the management of lichen sclerosus, 2018. Br J Dermatol. 2018 Apr;178(4):839-853. doi: 10.1111/bjd.16241. PMID: 29313888. 

Mautz TT, Krapf JM, Goldstein AT. Topical Corticosteroids in the Treatment of Vulvar Lichen Sclerosus: A Review of Pharmacokinetics and Recommended Dosing Frequencies. Sex Med Rev. 2021 Jul 2:S2050- 0521(21)00033-0. doi: 10.1016/j.sxmr.2021.03.006. Epub ahead of print. PMID: 34226161.

Terras, S.; Gambichler, T.; Moritz, R.K.C.; Stücker, M.; Kreuter, A. UV-A1 Phototherapy vs Clobetasol Propionate, 0.05%, in the Treatment of Vulvar Lichen Sclerosus. JAMA Dermatol. 2014, 150, 621. 

6 Comments

  • Jan

    I’ve been following your group for a couple of years now and it’s been a game changer and very reassuring. This disease has a life of its own so the individual approach is si important.
    I’m loving the new collaboration and format; revisiting information and keeping up to date with advances in LS.
    Thanking you so much ❤️

    • Jaclyn Lanthier

      Hi, Jan! I appreciate your continued support so much. Yes! LS is super individualized and therefore it should be treated and managed as such – totally agree. Yay! We are happy about the partnership too 🙂

  • Judy O

    Thank you so much for all of the time and effort you put into bringing us this information. My little MPH research heart was so pleased by all the citations! You’re doing a lot of work behind the scenes to bring us this info.

    • Jaclyn Lanthier

      Hi, Judy. My pleasure, it’s important for me to always cite my sources 🙂 It definitely does take a lot of work behind the scenes I’m glad you can appreciate it because I take a lot of time to do this.

  • Jay

    Really appreciate your work helping us understand how to manage this condition! One thing that doesn’t seem to be addressed anywhere is the issue of whether we can apply the steroid ointments to areas that naturally have hair? I’ve definitely read and heard not to but LS seems to affect areas at the very least directly next to hair-bearing skin, so it would be impossible to avoid? (Always hard to know since the medication summaries also say not to apply it at all to the areas where we’re using it!).

    • Jaclyn Lanthier

      Thanks for your comment, Jay. That’s a really good question and one that, from my understanding, doesn’t have a super clear answer. I’ll share what I have heard at conferences, but I am not an MD and this is not medical advice. LS tends to primary affect the non-hair-bearing areas (clitoris, labia minora, perineum, etc.), that said, I have absolutely heard of folks who do have confirmed LS in that area. If there is confirmed LS, then it is safe to treat; if you aren’t sure, I always recommend confirming with your healthcare provider. Specifically, I either 1) have them show me on my body where to apply the medication, and/or 2) print out a diagram and have the doctor highlight where you need to apply. We are all different and application may vary per individual. Always best to check with your doctor. Sorry there isn’t a clear answer for this (yet). With love,

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