Treatment is a fundamental piece of getting your symptoms under control and getting into remission. However, many doctors do not discuss treatment options with us, let alone how to use our treatment, and what the benefits and risks are. Therefore, I decided to start a treatment series on the blog where I go through different treatment options, what the science says about them, what the risks and benefits are, etc. This series starts with the gold standard for LS treatment; steroids.
In my last post, I dicussed 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. Read that post here. In today’s post, I 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.
Treatment Plans: Benefits versus Risks
There are benefits and risks to every treatment (LS or otherwise). It is important to know both in order to make an informed decision about your healthcare plan. Ideally, the benefits versus risks conversation should be had between you and your healthcare provider. However, this isn’t always possible. In the event that it is not, hopefully last weeks post plus this weeks post will help you better understand steroids as a treatment option.
The benefits of treating lichen sclerosus with topical corticosteroids are:
- Manage and reduce active symptoms
- Restore the skin to a healthy texture (aka get you into remission)
- Reduce the likelihood of LS progressing to vulvar cancer
- Slow the progression of the disease
- Reduce the risk of future scarring (e.g., labial fusing, clitoral fusing, etc.).
What follows is a discussion of side effects that are documented in the literature. It is possible there are side effects that have just not been documented yet. Further, the majority of studies on steroids and lichen sclerosus use Clobetasol (Temovate) as the steroid under investigation.
Steroids and Yeast Infections: What Does the Science Say?
One side-effect that is documented in the literature is yeast infections (aka candidiasis). A one off yeast infection may not be anything of concern, but if you are getting recurrent yeast infections, it *may* be due to steroids.
Let’s look at a few studies on this topic.
A 2001 study was conducted by Smith and Quint where the authors investigated the efficacy in children with vulvar lichen sclerosus. Their study included 15 children in the trial. Of the 15 children, 1 of them developed a vulvar yeast infection due to Clobetasol use.
A 2004 paper by Renaud-Vilmer et al. analyzed the efficacy of Clobetasol for remission and reducing the risk of vulvar cancer. This prospective study, which was conducted between 1981 and 2001, included 83 people with vulvar lichen sclerosus. In assessing adverse effects of Clobetasol, only 1 patient out of 83 developed a yeast infection from the medication.
In a 2018 review paper by Lee and Fischer, the authors note steroid therapy can in some cases cause yeast infections. They note this is commonly controlled with antifungal therapy such as oral or topical nystatin.
It seems that in a small subset of folks with vulvar lichen sclerosus, yeast infections can be a side effect of steroids. Of course, more research is needed, but this is an important thing to be mindful of.
What To Do If You Experience Recurrent Yeast as a Steroid Side Effect
A one-off yeast infection can happen to anyone, LS or not. However, if you are experiencing recurrent yeast infections and suspect it could be a side effect of your steroid medication, it is important to discuss this with your doctor. A doctor who is well versed in lichen sclerosus will find a solution that works for you.
For example, your doctor can:
- Prescribe a preventative, monthly, oral anti-fungal.
- Prescribe a topical anti-fungal.
- Have a topical anti-fungal compounded into your steroid medication.
- Reduce the potency of your steroid medication.
- Reduce the frequency of your steroid medication.
- Prescribe an alternative treatment to topical corticosteroids such as calcineurin inhibitors (e.g., Pimecrolimus or Tacrolimus).
This list is not exhaustive. Discuss these options and your concerns with your doctor to come up with a solution that works for you and your body.
Steroids and Erythema
Another potential side effect is erythema, which is essentially a rash (Lee and Fischer, 2018). Unfortunately, the literature that mentions erythema as a side effect of steroids do not go on to describe what this rash looks like. Google image searching suggests red or darkened colored circles, but no clear description of what the rash looks like in the case of steroids and the genitals.
Therefore, if you suspect erythema in response to steroid use, give your doctor a call and ask for them to examine the rash and discuss next steps.
Lee and Fischer (2018) note that erythema is typically controlled by reducing the dose or potency of the steroid. For example, if you are using the medication daily, your doctor *may* suggest bringing the dose down to every other day. Alternatively, they may lower the potency of your steroids. Clobetasol is classed as an ultra-potent steroid, but steroids are classed into multiple categories from ultra-potent to low potency. Your doctor may decide to put you on a mid-potency range steroid instead.
Please remember, just because one steroid does not work for you, does not mean that you cannot use steroids. There are a number of steroids on the market that vary in potency that you can explore with your doctor.
Steroids and Stinging
Another side effeect documented in the literature is stinging when you apply the steroid. This is more likely to happen if you have any open wounds like an ulcer, cut, tear, or fissure. Lee and Fischer (2018) note this typically subsides once those wounds heal.
Another reason your steroid may sting when you apply it is you are using a cream-based steroid. Steroids come in multiple bases, such as gels, foams, lotions, creams, and ointments. Typically, steroids for LS are prescribed in either a cream or ointment base. The cream base contains alcohol, which, as you can imagine, can cause stinging when you apply it to the vulva (especially if you have any open wounds). The ointment base does not contain alcohol, and is therefore less likely to sting or irritate the genital skin on application.
If you want to learn more about steroid bases and more reasons why the ointment is preferred over the cream, click here to watch my video on this topic.
Steroids and Allergic Reactions
While not super common, some folks do have allergic reactions to Clobetasol. This is typically due to the base, and not the medication itself. That is, Clobetasol's base contains something called parabens, which some folks are allergic to.
If you have an allergic reaction to the base of your steroid, you may experience *new* redness, *new* swelling, *new* burning or stinging, etc.
If this occurs, it is important to discontinue use and discuss alternative treatment options with your doctor. There are many options for allergy cases, some of which include:
- Compounding your medication into an allergen free base, or
- Switching to Mometasone Furoate 0.1% which doesn't contain any parabens and has been show to be equally as effective as Clobetasol in scientific studies (Dr. Krapf, GPHAM Expert Webinar, Pelvic Global Academy, March 15th, 2023).
Please discuss these options with our doctor if you have a known paraben allergy or if you suspect an allergic reaction.
Steroids and Skin Thinning
Time to bust some myths!
Spoiler alert – skin thinning is actually *not* a side effect of steroids when it is used on skin with lichen sclerosus *and* when it steroids are applied properly.
Many folks worry about steroids thinning the skin; especially folks who already have some skin thinning. This is a super valid concern! Luckily, skin thinning from steroids is uncommon, especially if you use your steroid properly.
A paper by Mautz et al. 2021 took a deep dive into steroid side effects for folks with lichen sclerosus. On the topic of skin thinning, they found that those reporting skin thinning as a side effect did not have lichen sclerosus; on the other hand, the papers looking at patients with lichen sclerosus reported no skin thinning as a side effect (Mautz et al., 2021, 5).
Lichen Sclerosus Skin is Different from Non-Lichen Sclerosus Skin and this Difference Matters
Part of the reason is that lichen sclerosus skin is significantly different than non-lichen sclerosus skin. This means there will be different reactions to the medications, depending on your skin. You might be surprised by this by this, but the average stratum corneum – which is the top-middle layer of the skin – is approximately seven times thicker than the average, non-lichen sclerosus skin (ibid).
That means that yes, while the top layer of skin that you see with your eye appears thin, the layers below it are incredibly thickened, and that thickening is what is responsible for symptoms like itch and the cracking, tearing, and fissuring of the skin.
This might be why studies have shown zero to little thinning of the skin when steroids are used correctly and on people with lichen sclerosus. To give a couple of examples, a study with 80 patients using Clobetasol demonstrated no atrophy or thinning of the skin (Renaud-Vilmer et al., 2004). Another example comes from Dalziel et al., 1991. This study also showed no atrophy and thinning of the skin in patients using Clobetasol for 22 months.
Risks and Benefits Again
Hopefully you now know the benefits and importance of using steroids as a treatment for lichen sclerosus *and* are aware of the risks (i.e., side effects) that come with them. You can use this information to help you weigh the pros and cons against steroids and help you make an informed decision about your treatment plan.
In sum, steroids are the gold standard and first-line treatment for lichen sclerosus as they are unmatched in their ability to reduce inflammation, control and slow the progression of the disease, get patients into remission, and reduce the chances of developing vulvar cancer. The main documented side effects include yeast infections, erythema, and stinging. Each of these side effects can be controlled by working with your doctor. Skin thinning is a big worry in the LS community. It is true that steroids can cause skin thinning, but that is true for healthy skin. Since lichen sclerosus skin is different than regular skin, skin thinning isn’t a major side effect of steroids if they are used properly on skin with lichen sclerosus.
Let me know in the comments below if you have experienced any of these side effects and what your doctor did to help.
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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
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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.