Oral Retinoids for Hidradenitis Suppurativa: Are They Effective? | myHSteam

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Oral Retinoids for Hidradenitis Suppurativa: Are They Effective?

Posted on June 25, 2024

Successful management of hidradenitis suppurativa (HS) may require trial and error, and some people with the condition try a wide range of medications to control their symptoms. One potential treatment for HS — also known as acne inversa — involves the use of oral retinoids.

Following are some facts about how oral retinoids may help reduce the abscesses, tunneling, and other HS symptoms you experience.

What Are Oral Retinoids?

Oral retinoids, a dermatological treatment derived from vitamin A, have been used to successfully treat severe acne, including closed comedones (whiteheads) and open comedones (blackheads). While researching different forms of vitamin A, scientists found that various retinoids may work for other conditions besides acne.

Systemic oral retinoids have proven effective for several autoimmune diseases, which occur when a person’s immune system attacks and damages healthy tissues. Oral retinoids help decrease skin inflammation, thereby reducing symptoms of certain autoimmune diseases.

Numerous oral retinoid treatment options are available, including first-generation oral retinoids like isotretinoin and alitretinoin, as well as a second-generation oral retinoid, acitretin.

Can Oral Retinoids Treat Hidradenitis Suppurativa?

Several medical treatment options are available for HS. The therapy that is best for you will depend on your symptoms and concerns. Talk with your doctor to find the best course of treatment to manage your HS.

Oral retinoids have varying degrees of efficacy in treating HS. Options like isotretinoin and acitretin can treat comedones and scarring, and they may also be effective in reducing HS lesions and other symptoms. If your main HS symptoms include comedones or scarring, oral retinoids may be an effective treatment option for you.

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.”

Keep in mind that oral retinoids aren’t the first treatment option for any condition. For example, doctors generally prescribe isotretinoin only when other treatments haven’t been effective.

Read more about specific medications in this list of treatments for HS.

How Do Oral Retinoids Compare to Other Hidradenitis Suppurativa Treatments?

Topical antibiotics, oral retinoids, and biologics are all options for treating HS. The condition is classified into stages based on the Hurley Clinical Staging System. Your dermatologist will select an intervention based on the stage of your HS, your symptoms, and other factors. The most common symptoms of HS are lesions, inflamed nodules, and sinus tracts, and the stages of HS vary depending on their severity.

Disease severity is classified into the following Hurley stages:

  • Stage 1 — Lesions with no scarring
  • Stage 2 — Recurring abscesses and scarring
  • Stage 3 — Widespread abscesses and scarring

Topical antibiotics are a common treatment for people experiencing mild (stage 1) HS. Some antibiotics have anti-inflammatory properties and can help control HS. One or a combination of antibiotics may be used for treatment.

Antibiotics for HS treatment include:

  • Clindamycin
  • Doxycycline
  • Rifampin

Topical antibiotics like clindamycin are often a first-line treatment for mild HS because they’re safe and well-tolerated. Clindamycin has shown effectiveness in treating inflammatory abscesses on the skin, but it may not be as effective in moderate or severe cases of HS. In moderate to severe HS diagnoses, oral retinoids are more effective.

Biologics are a treatment option for people with more severe (stage 3) HS who haven’t had success with any topical or oral treatment. Biologics are administered as an injection and work to modulate (alter) the immune system to stop the disease. One biologic type is tumor necrosis factor (TNF) inhibitors, which include adalimumab and infliximab.

These biologics reduce TNF in the immune system and can decrease the amount and recurrence of lesions in people with HS. Biologics are effective in treating inflammation, a main feature of HS.

The best treatment option for you will be the one that aligns with your lifestyle and effectively controls your HS symptoms.

How To Properly Take Oral Retinoids

Always follow the prescription label and your doctor’s instructions on when and how to take your oral retinoid prescription. 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 health care provider if a liquid option is available. Don’t stop taking the oral retinoid unless directed by your doctor.

Oral retinoids, like isotretinoin, are not recommended for use during pregnancy or while breastfeeding. You should also avoid oral retinoids if you’re trying to become pregnant.

Who Can Take Oral Retinoids?

If you’re experiencing surface acne symptoms from HS and other topical treatments haven't worked for you, an oral retinoid may be worth exploring with your doctor.

Always speak with your health care provider if you experience any of the following conditions before starting oral retinoid treatment:

  • Anorexia
  • Asthma
  • Depression
  • Diabetes
  • Heart disease
  • High cholesterol
  • Inflammatory bowel disease (IBD)
  • Liver disease
  • Mental health concerns
  • Osteoporosis
  • Pregnancy
  • Suicidal thoughts

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.

Oral retinoids can cause severe birth defects. Females need to have two negative pregnancy tests before beginning oral retinoid treatment and must take a pregnancy test every month while on treatment. While taking oral retinoids, females must use two forms of contraception to prevent pregnancy, starting at least a month before beginning treatment. Contraception shouldn’t be discontinued until a month after treatment has stopped. If you choose to take hormonal birth control as a form of contraceptive, it should contain estrogen. Progesterone-only forms of contraception generally do not work as well to prevent pregnancy.

Always talk with your health care provider before starting oral retinoid treatment if you use any of the following supplements, treatments, or medications:

  • St John’s Wort
  • Vitamins or supplements containing vitamin A
  • Steroids
  • Progestin-only hormonal birth control
  • Any medication that makes you sensitive to the sun
  • Topical acne medications like benzoyl peroxide and salicylic acid
  • Alcohol
  • Seizure medication

Side Effects of Oral Retinoids

Before starting treatment with 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.”

Another member had similar concerns about oral retinoid side effects, asking, “Has anyone tried isotretinoin before? I’m due to start a six-month course in January, but apparently, the side effects are quite bad.”

Side effects of oral retinoids may include:

  • Changes in mood or behavior
  • Eye damage
  • Acne flare-up
  • Dry eyes
  • Sun sensitivity
  • Increase in blood glucose (sugar)
  • Increased cholesterol

These side effects have prompted some people to avoid the treatment for their HS. One myHSteam member said, “I’ve refused to take them purely because you can’t go in any sun with them.”

Another member added, "My doctor said that only Accutane can help, but I don’t want it because it has an impact on the mood.”

Always monitor your side effects and long-term results while taking oral retinoids for HS, and follow up frequently with your doctor. Together, you can find ways to manage any potential symptoms you may experience.

Talk With Others Who Understand

On myHSteam, more than 42,000 members from around the world 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.

    Posted on June 25, 2024
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