Hidradenitis suppurativa (HS) is a painful skin condition that causes lesions (bumps that may be swollen, inflamed, or filled with fluid), abscesses (collections of pus under the skin), and tunneling (sinus tracts) in places like the armpits or groin. The condition can be hard to treat, and many people try different medicines, including oral retinoids, to get relief.

In this article, we’ll explore what oral retinoids are and how they might help people with HS.

What Are Oral Retinoids?

Oral retinoids are a treatment derived from vitamin A. These treatments have been used to treat skin conditions, like severe acne, for decades. Oral retinoid options include isotretinoin, acitretin, and alitretinoin.

Oral retinoids affect how skin cells grow and mature. They can help decrease skin inflammation and shrink sebaceous glands (oil glands). These actions make oral retinoids a potential treatment for a number of skin diseases, including skin diseases that are impacted by the immune system. Examples include psoriasis and cutaneous lupus.

Can Oral Retinoids Treat Hidradenitis Suppurativa?

Oral retinoids aren’t the first treatment option for HS. Your dermatologist may recommend them only after you’ve already tried other HS treatments. These might include topical or oral antibiotics, hormonal treatments, systemic immunosuppressants, and biologics.

One myHSteam member found oral retinoids to work for them, saying, “I’m doing OK. Experiencing quite a bit of pain … but it’s working. I can see improvements in my skin, and I don’t feel unwell.”

Overall, the research on oral retinoids is mixed. Below is a summary of what we know about oral retinoid options.

Isotretinoin

Isotretinoin is most commonly known by the brand name Accutane, although it’s also sold as several other brands. It’s considered a third-line HS treatment, according to the North American Clinical Management Guidelines for Hidradenitis Suppurativa. Isotretinoin has been shown to reduce the amount of inflammation-promoting proteins that contribute to HS.

Isotretinoin is effective at treating acne in part because of how it shrinks sebaceous glands. However, there is some concern that isotretinoin could worsen HS because of this.

There is mixed evidence about how well oral isotretinoin works for people with HS. In one study of 358 people, 77 percent reported no improvement, while nearly 7 percent reported their disease had worsened. Sixteen percent reported an improvement.

In another smaller study, 68 percent of participants reported a complete or partial response, while the rest reported no response to oral isotretinoin.

Acitretin

Acitretin is sold under the brand name Soriatane. It’s considered to be a second-line HS treatment, according to the North American Clinical Management Guidelines for Hidradenitis Suppurativa. Acitretin has also been shown to reduce inflammation-promoting proteins. However, it affects different proteins than isotretinoin.

The evidence supporting using acitretin for HS is mixed. In one study of 17 people, 47 percent of participants showed a 50 percent reduction in HS severity compared to where they started. However, the same percentage of people stopped taking the medication, either because it didn’t work or because they couldn’t tolerate the side effects.

Another study reported in Dermatology and Therapy found that male participants responded better than female participants to acitretin. The study also showed that people with certain types of symptoms had better responses.

Alitretinoin

There is very limited research on alitretinoin for HS. One study reported in the Journal of the American Academy of Dermatology found that 78.5 percent of 14 female participants showed improvement while using oral alitretinoin.

Treatment guidelines for HS do not suggest using this treatment because of the limited information. Oral alitretinoin is not available in the United States.

Several treatment options are available for HS. The best therapy for you will depend on your symptoms, your overall health, and other factors, like whether you’re trying to become pregnant. Talk with your doctor to find the right treatment to manage your HS.

How To Properly Take Oral Retinoids

Always follow the prescription label and your doctor’s instructions on when and how to take an oral retinoid. You should take the pill as it is, and avoid crushing it. If you’re unable to swallow the capsule or tablet whole, ask your healthcare provider if a liquid option is available. Don’t stop taking the oral retinoid unless directed by your doctor.

Oral retinoids can cause severe birth defects. If you’re pregnant or trying to become pregnant, these medications are not considered safe. Before starting treatment with an oral retinoid, you'll need two negative pregnancy tests — and you'll need to take a pregnancy test every month while using the medication.

While taking oral retinoids, it’s important to use two forms of contraception to prevent pregnancy — starting at least one month before beginning treatment. If you choose hormonal birth control, make sure it contains estrogen. Progesterone-only methods are generally less effective at preventing pregnancy and may not be recommended during retinoid treatment.

If you're taking isotretinoin or alitretinoin, you should continue using two forms of contraception for at least one month after stopping treatment. If you're taking acitretin, it's important to avoid pregnancy for three years after you’ve discontinued the medication, because it stays in the body longer.

Who Can Take Oral Retinoids?

Oral retinoids are not considered a first treatment option for HS. However, if other treatments haven’t helped your symptoms, your doctor may suggest them.

Before prescribing an oral retinoid, your doctor will ask detailed questions about your health history. That’s because, in addition to pregnancy, certain health conditions may make oral retinoids unsafe or less appropriate. Be sure to talk with your doctor if you experience any of the following:

• Anorexia or disordered eating
• Asthma
• Depression or other mental health concerns
• Diabetes
• Heart disease
• High cholesterol
• Inflammatory bowel disease (IBD)
• Liver disease
• Osteoporosis or low bone density
• Suicidal thoughts or self-harming behaviors

Note: If you or someone you know needs help, you can contact the 988 Suicide & Crisis Lifeline by calling or texting 988 or chatting online.

It’s important to tell your healthcare provider about any medications or supplements you’re taking before starting an oral retinoid. Oral retinoids could interact with other medications or supplements, including:

• St. John’s wort
• Vitamins or supplements containing vitamin A
• Steroids
• Any medication that makes you sensitive to the sun
• Topical acne medications like benzoyl peroxide and salicylic acid
• Seizure medication
• Certain antibiotics

This is not a complete list, so be fully transparent with your doctors and pharmacist.

Side Effects of Oral Retinoids

Before you start taking oral retinoids, you should be aware of other potentially serious side effects they may cause, beyond severe birth defects.

One myHSteam user asked, “Does anyone take isotretinoin retinoids? My dermatologist wants me to start on them, but I’m wary of the side effects.”

There are many potential side effects of oral retinoids. Some examples include:

• Changes in mood or behavior, including thinking about hurting yourself
• Eye damage and vision problems
• Dry eyes, mouth, and nose
• Acne flare-up, usually when you first start treatment
• Sun sensitivity
• Increased blood glucose (sugar) levels
• Increased cholesterol
• Ringing in your ears or hearing changes

You may need to have periodic blood tests while taking oral retinoids. Always monitor your side effects while taking oral retinoids for HS, and follow up frequently with your doctor. Together, you can work to manage side effects and find the most effective treatment for your HS.

Talk With Others Who Understand

On myHSteam, members come together to ask questions, offer support and advice, and share their stories with others who understand life with hidradenitis suppurativa.

Are you taking oral retinoids to treat your HS? Have you tried multiple HS treatments and found one to be more effective for your specific symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.