Navigating Lichen Sclerosus Topical Steroids: Side Effects and Effectiveness

Lichen sclerosus (LS) is a chronic inflammatory and often painful skin condition that predominantly affects the vulva. Doctors commonly prescribe potent topical steroids to repress inflammation and manage symptoms. The scientific literature supports the use of steroids for treating LS, but is that the whole story?

Examining the research and the real-life experience of one patient, Abby, who has an interesting LS and steroid therapy journey, I hope to shed light on the real deal behind steroid effectiveness and side effects and uncover the potential pitfalls and limitations patients may experience.

QUICK REFERENCE

• Lichen Sclerosus Topical Steroid Treatment Research
• Emerging Pharmacokinetics Research
• One Woman’s Story
• How Do Lichen Sclerosus Topical Steroids Work?
• How to Maximize the Effectiveness and Navigate Steroid Therapy
• Tapering and Loss of Effectiveness
• A Patient’s Perspective
• Alternatives
• Adrenal Function and Suppression of the Immune System
• Regenerative Therapies and Steroids
• Discussion

Lichen Sclerosus Topical Steroid Treatment Research

First, it's essential to understand why steroids are the gold standard treatment for lichen sclerosis.

If you have been diagnosed with LS, you almost certainly were directed to high-potency topical steroids as a first-line treatment. (1)

In a scoping review conducted in 2021, high-potency topical corticosteroids, like clobetasol or betamethasone, were found to be the gold standard in LS treatment because several double-blind, randomized studies found that they significantly reduced symptoms and improved skin characteristics.

A double-blind, randomized prospective study published in 2014 evaluated the effectiveness of clobetasol and topical tacrolimus in treating LS. Topical tacrolimus, or Protopic, is a calcineurin inhibitor used to treat skin conditions characterized by inflammation and immune system involvement. Fifty-five women newly diagnosed with LS were treated with either medication for three months, and afterward, researchers concluded that treatment with clobetasol was significantly more effective than topical tacrolimus. (2)

A previous double-blind, randomized, controlled trial from 2011 investigated clobetasol versus pimecrolimus, another calcineurin inhibitor similar to tacrolimus. This study of 38 women with biopsy-confirmed LS also showed that following a 12-week treatment period, clobetasol was more effective at controlling inflammation than pimecrolimus. However, both topicals improved itching and burning symptoms. (3)
In a more recent double-blind, randomized, controlled study from 2022, researchers investigated the efficacy of topical progesterone versus clobetasol. The study included 37 premenopausal women treated for 12 weeks and found that the more significant for those receiving clobetasol. Complete remission was seen in 60% of patients who received progesterone, compared to 81.3% who received clobetasol. (4)

These studies demonstrate that there is high-quality research demonstrating the efficacy of high-potency topical corticosteroids in the treatment of LS. However, it is essential to note that these studies often have small patient sample sizes, relatively short treatment and evaluation periods, and no consensus on appropriate dose and application methods.

Emerging Pharmacokinetics Research

A recent review performed in part by Dr. Jill Krapf, a clinician who has researched and spoken extensively about steroids and LS, looked specifically at a large body of research to gain a greater understanding of the pharmacokinetics of steroid therapy. Pharmacokinetics focuses on how the body processes drugs. (5) Concerning LS and steroids, it involves figuring out what is happening within the skin at a cellular level. It aims to determine a proper dosing regimen and minimize potential local or systemic side effects.

Dr. Krapf and the research team were investigating the following questions:

1. How much topical steroid is absorbed into healthy vs. hardened skin?
2. What are the best guidelines clinicians can provide patients to maximize the effectiveness and avoid any pitfalls of steroid therapy?
3. What evidence is there that long-term use of topical steroids thins the skin, suppresses the immune system, causes adrenal fatigue, or becomes less effective over time? (6)

One Woman’s Story

Weaving Abby’s unique LS story with Dr. Krapf’s findings, I hope to illustrate what a difficult healing journey can feel like from the patient’s perspective while juxtaposing it with how the newest research on steroid therapy might have helped her avoid some pitfalls or at the very least, navigate it all with better results.

Abby was diagnosed with LS in 2006 at 26 years old. She was a healthy, fitness-conscious woman with a normal BMI who ate a veggie-rich diet, had regular menstrual cycles, and had an active sex life. It all started with a small, very itchy white patch on the right side of her clitoral hood.

“I was concerned about it because the itch was insane, and I thought for sure I must have an STI. I was uninsured then, so I made an appointment at a local clinic and lucked out. The gynecologist who did my exam diagnosed LS with certainty and actually pointed out that I was presented with a classic figure-eight pattern of white skin around my vulva and perianal area. I left with a prescription for clobetasol, then promptly had myself a big ol’ pity party,” she explains.

Pity party aside, she was off to a decent start. She caught it relatively early, as she herself didn’t even notice the other affected skin. She got a prompt diagnosis and walked out of the first appointment with the scientifically backed gold standard, ready to treat and be done with it.

How Do Lichen Sclerosus Topical Steroids Work?

Of course, Abby, like all LS patients, asked - why me? And, to be honest, there still isn’t enough research to answer that definitively. LS is likely caused by a mix of factors, including a genetic predisposition, an autoimmune component, hormones, diet, trauma, and other stressors. (7) It is known that predisposed individuals become symptomatic when their body begins to recognize a protein in the basement layer of the skin as ‘not-self,’ triggering an immune response leading to chronic inflammation.

“Yep, I was bummed. In trying to gain insight into why I might have developed LS, I came up with a whole host of potential reasons: a strong family history of autoimmune issues, an overtaxed immune system from getting six travel vaccines in a day, followed by a rare, recurrent herpes gladiatorum infection acquired while traveling abroad. I even thought that rough sex might have been a contributing factor, but at least I had the solution in hand, or so I thought,” she explained.

Rather than dealing with systemic inflammation, topical high-potency steroids, like what Abby had been prescribed, specifically address local inflammation in the vulvar skin. They do this by targeting inflammatory cells and decreasing inflammatory mediators, substances in the tissue that lead to more inflammation.

“I was told to apply a pea-sized amount once daily for a month, then taper to every other day for two weeks, and then every third day, indefinitely. As a no-makeup, spontaneous type, I wasn’t loving the amount of upkeep, but I was diligent. I even bought a box of finger condoms to apply and kept a physical calendar on the wall in my bathroom. I tapered as instructed, but things just started getting worse. The white patches were more prominent, the itching and tearing unbearable, and my labia and clitoral hood were fusing. My conclusion - steroids don’t work,” Abby continued.

Dr. Krapf knows it's not straightforward through research and clinical experience. When beginning steroid therapy for LS, you have to consider a few specifics, including:

• Which potency of steroid to use
• Which delivery method is appropriate: foam, gel, lotion, cream, or ointment
• How to ensure the steroid is absorbed and penetrates down to the layer where the inflammation is present (6)

With LS, inflammation occurs in the basement layer of the skin, affecting how the skin forms above it. LS-affected skin is thick or hyperkeratotic, meaning it has too many keratin cells.

Histologically speaking, or at the cellular level, LS skin averages about 1200 micrometers in thickness, as opposed to 170 micrometers in normal, healthy vulvar skin. Because the inflammation is happening in deeper skin layers, the steroid treatment must penetrate the thick upper layers of skin to reach the affected skin and control that damaging inflammation. (6)

Dr. Krapf explains that when LS skin is biopsied, the very top layer of skin cells is almost wispy or thin, but just below that, the skin is very hardened, almost like a callous. This is a gradation through the layers of skin, and it can be confusing for patients who are visibly seeing skin that appears relatively thin but are treating a condition that involves thickened hyperkeratotic skin.

She believes that thinning skin's well-recognized possible side effect is much more likely to cause atrophy in areas of healthy tissue than in thick LS-affected skin, mainly if it’s used too often or applied generously. She further cautions that visible examination does not show the inflammation but rather the damaging effects of the inflammation happening below.

How to Maximize the Effectiveness and Navigate Steroid Therapy

Resulting from this new investigative research and years of clinical practice, Dr. Krapf recommends the following (8):

Choose the Suitable Steroid for You:

• There are different potencies and delivery methods to consider.
• Go into it with an understanding that you may need to do some trial and error to find what works best for you and to determine if you have any allergies to the ingredients included in the base of the steroid preparation.
• Consider a heavier ointment to penetrate deep skin layers (foams and gels are typically too light and work better on thin skin, like the scalp).
• Perianal areas may require a reduced potency as they can be more sensitive.

Soak and Massage:

• Soak in a sitz bath for 15-20 minutes to soften the thick top layers of skin and allow for greater penetration.
• Using a timer, gently massage the steroid into only the LS-affected skin for 90 seconds to 2 minutes to enhance absorption.

Use a Moisturizer or Emollient:

• Another known side effect of prolonged steroid use is increased water permeability and transepidermal water loss (TEWL) (9).
• TEWL, or skin dehydration, requires using a moisturizer to keep the skin hydrated, less sticky, and less vulnerable to damage and scarring.
• Use trial and error, knowing that some emollients may irritate you, but others won’t - you have options!

Create a Realistic Timeline for Healing:

• It can take 3-6 months of treatment to bring an active flare into remission; tapering down should only happen when the inflammation has started to subside.
• LS is known to be a stubborn condition requiring consistent maintenance and patience, so approach steroid therapy expecting it to take time.
• Important note -- immediate or quick improvement of irritating symptoms (itch, burning, etc.) or an improvement in the visual appearance of the outermost layers of skin does not mean that the disease-causing inflammation in the deeper layers of skin has subsided, and this often takes much more time.

Find Caring Support:

• Your practitioners and you should be on the same team working towards a common goal - remission and overall good health.
• Not all doctors are created equal! If a gynecologist or dermatologist is treating you, understand that they may treat very few cases of LS. If you feel like you’re not being heard or your concerns are being minimized, don’t hesitate to ask them for a referral to a vulvar specialist.
• Typically, vulvar specialists are treating many LS patients and understand that it’s a stubborn condition that may require a Plan A, Plan B, and maybe even a Plan C and D to get you into remission!

You May Also Benefit from Topical Hormone Therapy:

• Many women, often those who are postmenopausal, also experience vaginal atrophy—caused by the loss of estrogen in their vulvar skin.
• This can be erroneously attributed to steroid use.
• You may benefit from also applying a hormonal cream, like Estrace.

Steroids Don’t Work for Everyone!

• The research found that a small amount of the steroid does enter the bloodstream with little impact. Still, a very, very small percentage of patients are susceptible to this small amount of steroid in the bloodstream, and they are not good candidates for topical steroid treatment - plain and simple.
• Return to the bell curve—outliers will always be on both ends!

Tapering and Loss of Effectiveness

Suppose you’re looking at patients' experiences with steroid therapy online. In that case, you have likely come across the rebound effect, and it is well known that misusing a topical steroid, using too much, or stopping use suddenly can induce irritation, like burning and redness. (10)

Dr. Krapf believes that, at least in LS, this skin-flaring side effect is not a result of cessation or the steroid becoming ineffective but rather a factor of how the steroid works.

The steroid works by decreasing inflammation, and as a result, the skin regenerates, becoming less dense and thick and more normal and healthy. This means that the same pea-sized amount of steroid applied to the skin will penetrate the skin better and have better therapeutic responses. Now, the patient requires a lower dose of the steroid, which is accomplished by using the same dose less frequently, hence the tapering. Even though the steroid is being applied less often, it has become easier for more of it to make its way down to the layer of inflammation.

In fact, a steroid ointment in healthier tissue will stay in the skin for about 3-4 days. As a result, when the LS skin is thick, a patient needs to apply the steroid daily. Still, as the tissue regenerates and becomes healthier, a maintenance dose of twice weekly should be sufficient to keep the vulvar tissue healthy and suppress chronic local inflammation. (6)

A Patient’s Perspective

“To look at my history through this new lens, I have to admit that the way I was approaching steroid therapy just wasn’t right. Soaking before application and rubbing the medication in two minutes wasn’t part of my routine. I’m sure the steroid didn’t come close to getting to the root of the inflammation. I didn’t treat it long enough and dropped it down to a maintenance dose too soon. I didn’t use an emollient until after I stopped the steroid. And I didn’t have a vulvar specialist. Even though I felt supported by my gynecologist and dermatologist, they were forthcoming that they didn’t have much experience with LS,” Abby explains.

She continues, “It’s likely that all of the things I attributed to the steroid were actually the damage being caused by uncontrolled inflammation. I didn’t have enough information about what was going on in my skin, and I didn’t have a clear view of how to approach steroid therapy. Looking back, I felt really out of control.”

Steroids may have gotten a bad rap, and Dr. Krapf agrees. Though she acknowledges that a tiny subset of patients will not respond well to steroid therapy, it is likely that most patients, like Abby, aren’t using the steroids correctly because there aren’t good guidelines. And, there aren’t good guidelines because there’s not enough research being done to create good guidelines.

For all those struggling through this process -- Deep breath in, deep breath out!

Dr. Krapf suspects that disease progression, including fusing, scarring, atrophy, etc., is likely because the patient hasn’t found the appropriate steroid or isn’t using it correctly. Also, many patients stop the regimen because of its high maintenance and might not have a clear picture of how the steroids are helping or hurting.

Her clinical experience has demonstrated that patients who correctly apply topical steroids, continuing for the long term at an adequate maintenance dose, do not experience progression or atrophy. Steroids have also been proven to mitigate the risks of developing VIN and vulvar cancer.

“Honestly, it’s crazy to think about my journey. I switched from clobetasol to betamethasone, but I applied it in the same manner as always. Through the advice of an online support group, I convinced my dermatologist to add topical estrogen and compounded testosterone to the mix. Other than having a regular cycle and having never taken hormonal birth control, I had no idea what my hormonal status was. It’s pretty clear that the LS inflammation was unchecked, and the disease progressed. I then developed a bizarre (and scary), unexplained petechial rash on both legs that came and went multiple times. I decided to get away from Western medicine completely,” Abby adds.

Alternatives

So, what came after steroids? “Wow, to answer what I did after stopping years of topical steroid and hormonal therapy -- well, I went on a spiritual journey,” she says through laughter.

“Let me just pull out my list:

• Research - spending days (maybe weeks) of my life doing online science research
• Daily sitz baths
• I applied all the topicals (a few of my personal favorites)
  • Emu oil (11)
  • Medical-grade manuka honey
  • Coconut oil
  • Special herbalist preparations
• Diet overhaul
  • Eliminated sugar and gluten
  • Focused on gut healing and health
• Daily yoga or exercise
• Community acupuncture (12)
  • I got weekly treatments from a caring, supportive acupuncturist specializing in women’s health and fertility
• I even went to a 10-day Vipassana meditation retreat (and loved it!) (13)

And… I did go into remission! I don’t know precisely what to chalk it up to, but I applied good, natural anti-inflammatories and soaked before, too! (Because it was helping with irritation -- not because I had made the absorption/penetration connection.) I was moving, meditating, and eating even better than before. I was practicing acceptance. (14) I had support. I wish it had lasted,” she details.

“But life changed, and after giving birth to two babies vaginally, nursing for nearly six years continuously, the LS came back with a vengeance. I was on a hormonal roller coaster. I had a very traumatic second birth, where I was given an L-shaped episiotomy against my wishes, and perineal healing wasn’t happening. I had less and less time for myself, so I wasn’t maintaining my diet and healthy lifestyle like before. I was devastated but still held tightly to my negative view of steroids.”

Adrenal Function and Suppression of the Immune System

Dr. Krapf’s research also examined how much steroid is absorbed systemically and whether or not it causes adrenal issues or suppresses the immune system. There aren’t good, extensive longitudinal studies that look at these effects, and studies that have suggested these as side effects were either case studies (often representative of an outlier) or patients who were treating much larger areas of their skin than your typical LS patient. (15)

Regenerative Therapies and Steroids

After experiencing a years-long postpartum flare, Abby finally got in front of a vulvar specialist.

“He’s great and was the first doctor I had ever sat in front of who acknowledged that my sexual health is important. He has plenty of experience treating LS, including cases that have progressed much more than mine. But, I came to him adamantly opposed to steroids. He is well versed in regenerative therapies, so my treatment course was for laser repair of my non-flexible, post-episiotomy perineal area, PRP stem cell injections, and treatment with the MonaLisa Touch laser,” she continues.

“The immediate after-effects were promising, but two years out, and I see that I’m still dealing with inflammation.”

Abby’s experience aligns with some of Dr. Krapf’s thoughts about regenerative treatments. She’s unconvinced by the current research that the CO2 laser has any effect on the local inflammation, histologically speaking. Still, she believes it may be helpful as a steroid pretreatment because it creates tiny holes in the tissue, which could help increase permeability, allowing for better steroid penetration. However, a sitz bath is an effective and much cheaper alternative to fractional lasers.

“Nearly 20 years out from my diagnosis, and I think it’s time to put steroids back on the table. I will address how they could help me at this point with my specialist, and if he feels they could be of benefit, I have so much more information to approach it entirely differently. I understand more about the disease process, the importance of reducing that inflammation once and for all, and taking a multimodal approach.”

“Slowly, I’m reincorporating the diet and lifestyle changes that worked in the past into family life. My handheld mirror, emu oil, and manuka honey are on my LS-dedicated bathroom shelf. And I’m also considering new-to-me things, like low-dose naltrexone. One foot in front of the other, my LS journey marches on,” Abby says, with a bit of a sigh.

Abby’s story highlights the complex and individualized nature of LS. You may relate to some of her experiences, or yours might be completely different. As with everything LS, steroid therapy should be approached on a case-by-case basis.

Find support, ditch the fear, and gain the self-confidence you need to take the reins on managing your LS. Find a knowledgeable gynecologist, or earn a referral to a vulvar specialist who can support you. If you decide to use steroid therapy, they can help you navigate the trial-and-error phase and overcome any challenges. They can even suggest other supportive or regenerative therapies to benefit you and your needs.

Sources:

1. Singh N, Mishra N, Ghatage P. Treatment Options in Vulvar Lichen Sclerosus: A Scoping Review. Cureus. 2021 Feb 24;13(2):e13527. doi: 10.7759/cureus.13527.
2. 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 Jul;71(1):84-91. doi: 10.1016/j.jaad.2014.02.019.
3. Goldstein AT, Creasey A, Pfau R, Phillips D, Burrows LJ. A double-blind, randomized controlled trial of clobetasol versus pimecrolimus in patients with vulvar lichen sclerosus. J Am Acad Dermatol. 2011 Jun;64(6):e99-104. doi: 10.1016/j.jaad.2010.06.011.
4. Günthert AR, Limacher A, Beltraminelli H, Krause E, Mueller MD, Trelle S, et al. Efficacy of topical progesterone versus topical clobetasol propionate in patients with vulvar Lichen sclerosus - A double-blind, randomized phase II pilot study. Eur J Obstet Gynecol Reprod Biol. 2022 May;272:88-95. doi: 10.1016/j.ejogrb.2022.03.020.
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   https://www.ncbi.nlm.nih.gov/books/NBK557744/
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7. Singh N, Ghatage P. Etiology, Clinical Features, and Diagnosis of Vulvar Lichen Sclerosus: A Scoping Review. Obstet Gynecol Int. 2020 Apr 21;2020:7480754. doi: 10.1155/2020/7480754.
8. How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly. Lichen Sclerosus Support Network. Published March 4, 2023. Accessed August 25, 2023. Available at: https://lssupportnetwork.org/how-to-apply-topical-steroid-treatment-for-lichen-sclerosus-correctly
9. Uva L, Miguel D, Pinheiro C, Antunes J, Cruz D, Ferreira J, Filipe P. Mechanisms of action of topical corticosteroids in psoriasis. Int J Endocrinol. 2012;2012:561018.
   doi: 10.1155/2012/561018.
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13. Vipassana Meditation. Published 2019. Available at: https://www.dhamma.org/en-US/index
14. A Look at Acceptance and Resilience. What Does It Mean? Lichen Sclerosus Support Network. Published August 22, 2023. Available at: https://lssupportnetwork.org/a-look-at-acceptance-and-resilience-what-does-it-mean/
15. Levin E, Gupta R, Butler D, Chiang C, Koo JY. Topical steroid risk analysis: differentiating between physiologic and pathologic adrenal suppression. J Dermatolog Treat. 2014 Dec;25(6):501-6. doi: 10.3109/09546634.2013.844314.