High-potency topical corticosteroids are the gold standard for treating Lichen Sclerosus (LS). But many people with LS worry about the effects of using this medication for an extended time. Will it eventually thin and damage the vulvar skin? To address this question, I talked with Dr. Jill Krapf. She’s a researcher and Lichen Sclerosus specialist who works with The Centers for Vulvovaginal Disorders in Washington, DC.
“Even though there are studies that show that topical steroids work, there’s not a consensus on how to apply them, the best way to apply them, how long to apply them – all of the nitty gritty things,” explained Dr. Krapf.
Understanding more about topical steroids and how they are absorbed and delivered throughout the body can help illuminate how they should be used. One of the review's biggest questions was if topical steroids thin the vulvar skin.
Comparing Lichen Sclerosus Skin to Typical Skin
It makes sense that people with Lichen Sclerosus would be nervous about their vulvar skin thinning from topical steroids. It’s what everybody hears about, and it’s topical steroids' most common side effect. Long-term topical steroids can thin skin, but we must consider how and why it’s being used.
When discussing topical steroids thinning the skin, we’re not necessarily discussing Lichen Sclerosus skin. And that makes a big difference.
Lichen Sclerosus skin is not like normal skin. Dr. Krapf explained it like this:
When we look at the stratum corneum (the top middle layer of skin) that’s thickened in Lichen Sclerosus skin, it measures 1,200 micrometers. Normal skin is 170 micrometers. So Lichen Sclerosus skin has a seven times thicker layer than normal skin. We’re talking about thinning that. You need to thin that skin if it’s done in a very controlled way.
It’s essential to remember that no literature addresses if topical steroids thin Lichen Sclerosus skin. The current literature looks at normal skin in animal models, bench research situations, or other conditions.
What We Know About Long-Term Steroid Use for Lichen Sclerosus
Multiple studies have looked at using topical steroids for the long-term maintenance of steroid regimens. That means getting someone in remission by applying the topical steroid more often and then tapering to a maintenance dose.
Although these studies weren’t tailored to look at the thickness or thinness of skin, they helped shed some light.
The most extensive study Dr. Krapf and her team reviewed had a sample size of 80 individuals.
“That’s a good sample size for Lichen Sclerosus, and they were specifically using Clobetasol in an ointment form,” explained Dr. Krapf. “Their regimen, which is a little more aggressive than what I do, was application of daily Clobetasol ointment for three months, then going down to three times a week until the patient was in remission.”
The study followed these same women for an average of 4.7 years. Some women were followed longer, and some for a shorter time.
“They found that there were no systemic or local effects,” said Dr. Krapf. “So no skin thinning and no systemic issues from the steroid. And that’s the best study that we have. Again, it’s just one study, but there are also a number of other ones that have less people in them or were followed for less time, and there was no atrophy.”
These types of studies help show that using topical steroids long-term may not negatively affect Lichen Sclerosus skin. And we know that there are some benefits to having a maintenance regimen. Even when a person with LS is in remission, the inflammation is still building in the bottom layer of the skin. Using topical steroids for maintenance may help reduce flare-ups and reduce the risk of vulvar cancer.
The Challenge with Testing Topical Steroids for Lichen Sclerosus
Testing if topical steroids thin Lichen Sclerosus skin specifically is harder than it may seem.
“The only way that we can absolutely, with very high certainty, show that this isn’t an issue is to take people diagnosed with Lichen Sclerosus and do a biopsy on them, and then have them use a long-term steroid regimen for 10-20 years. Then do repeat biopsies on them when they’re in remission to show there’s absolutely no atrophy,” said Dr. Krapf.
A study like that has multiple challenges. The data from the study wouldn’t come out for a generation or two. Plus, repeat biopsies would need to be done on volunteers who may not be experiencing Lichen Sclerosus symptoms.
“There are a lot of issues with doing a study like that just to show something that we have a feeling is already true,” Dr. Krapf added.
Still, Dr. Krapf and her team are exploring possible ways to test this.
Part of the reason people don’t fully understand how topical steroids treat LS is because of confusion around the condition. In the past, the name Lichen Sclerosus was called Lichen Sclerosus et Atrophicus, meaning “thickening, scarring of atrophy.”
“Initially, because of the outward appearance of the skin, it was thought that it was a condition of the skin being too thin. That’s not true,” said Dr. Krapf. “We know that’s not true because we have the histology to show that, which has evolved since the time that it was originally discovered hundreds of years ago.”
Treating Lichen Sclerosus with topical steroids makes a lot more sense when you understand that LS does not thin the skin; it thickens it. As many of us with LS know, a lot of catching up still needs to be done to change this perception.
Understanding How To Use Topical Steroids
Unfortunately, topical steroids have gotten a bad rap. They’re often misused because patients with Lichen Sclerosus aren’t getting the correct guidance. And, there’s a gap in science to help healthcare professionals give the best guidance. Until we have that information, we must do our best with what we have.
“Until we have quality studies, we need to basically base it on how the body works,” said Dr. Krapf. “My experience is that I don’t have patients that have atrophy who apply topical steroids in the correct way at a maintenance dose for long term.”
Only Applying Where It’s Needed
People can experience atrophy if they apply the topical steroid long-term on normal skin that doesn’t have Lichen Sclerosus.
For instance, if a person applies topical steroids in the groin creases, where the skin is already thin, they may develop abnormal blood vessels, redness, and even a fungal infection in that area. Dr. Krapf explained that LS doesn’t go into skin creases, so if there are symptoms of itching and redness, it’s usually yeast.
Tapering Your Medication
Dr. Krapf tapers the medication to ensure that her patients aren’t using too much topical steroids over time. Patients use it less frequently as their symptoms improve because the medication is able to get to the base layer of the skin, where the inflammation starts.
“When you have that really thick skin, you may have to put it on once a day because only a percentage is getting down to that bottom layer,” she explained. “As the skin becomes healthier and healthier, the medication is more effectively getting down to the bottom layer.”
Once a patient is in remission, Dr. Krapf recommends a maintenance dose of two times a week because the steroid ointment stays in the skin for three to four days.
“When the skin above is in remission, all of that medication is going where it needs to. It’s the perfect dose, and staying in there continuously because of the way the medication is working and how long it works. So it’s science-based,” said Dr. Krapf.
So even though science doesn’t yet give us all the answers on how to best use topical steroids for Lichen Sclerosus skin, we can use what we do know from science and experience to get the best possible treatments and care we can.
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.