My New Hidradenitis Suppurativa Treatment Plan

Last year, I switched health insurance plans, and as a result, the dermatologist that I was seeing to treat my hidradenitis suppurativa (HS) was no longer in-network. So, I had to find a new physician. I found a new dermatologist in my area that was covered under my health insurance plan, so I made an appointment and saw her for the first time last week.

My last physician – who diagnosed me with this chronic autoimmune skin condition – had been treating my hidradenitis by giving me cortisone (steroid) injections. While this was effective to control the inflammation and pain caused by my HS boils, it wasn’t really a long-term solution. I had also been prescribed clindamycin lotion to put on my hidradenitis lesions after showering, and over-the-counter Hibiclens, a wash that medical staff use to ‘scrub in’ in order to prevent any infections from occurring. However, neither of these topical solutions have gotten rid of my HS boils.

My new dermatologist was very caring, and didn’t rush me at all. She suggested that I use a new topical solution called resorcinol. Resorcinol is not covered by my health insurance, since it’s not made by a typical pharmacy, but rather, a compounding facility. While this is a downside, I did some research about the medication, and according to the Journal of the American Academy for Dermatology (JAAD), a 2010 study found that when patients with Hurley stage I or II HS used topical 15% resorcinol twice daily for 30 days, they saw a ‘marked decrease in pain and mean duration of the lesions’.

Below are the side-by-side results from the study. The first left-side image (A) is the patient’s baseline state, the second (B) is seven days into treatment, and the third image (C) is 30 days into the treatment. The right-side images (D, E, and F) are the respective lesions shown via ultrasonography.

Image courtesy of the JAAD (Journal of the American Academy for Dermatology).

Beyond the resorcinol, I spoke with my dermatologist about a medication called spironolactone for hidradenitis suppurativa treatment. Spironolactone is commonly used to treat acne and other similar skin disorders. Although HS is sometimes referred to as ‘acne inversa’, anyone with the condition knows that it’s not acne – not even close! That being said, HS may be similar to acne in the sense that it may be affected by hormones. Plus, a 2017 study of 46 women with HS found that acne and polycystic ovarian syndrome (PCOS) were the most commonly reported comorbidities with hidradenitis. The same study found that spironolactone was effective, even in small doses, for managing patients’ pain and inflammatory lesions.

Though I haven’t decided whether or not to move forward with spironolactone treatment yet, I thought it was interesting that there was a potential connection between HS and hormones, especially since I myself have adult acne and have had multiple ovarian cysts in the past. Plus, I have Sjogren’s Syndrome, an autoimmune disease that may also have a hormonal component. I do notice that my hidradenitis boils do worsen on a pre-menstrual basis.

I also discussed with my dermatologist getting laser hair removal in the areas most commonly affected by HS – the groin and underarms. She did say that laser hair removal does help with the follicular occlusion aspect of the disease. Obviously, there are drawbacks – for example, laser hair removal is almost impossible to do in patients with Hurley stage III of the disease, because it’s simply too painful. It’s also not usually covered by insurance, since it’s considered a cosmetic procedure, rather than a medical one. But, it’s another option that I want to consider since I’m still at stage I of the disease, and would rather have laser hair removal than wide-excision surgery.

Do you have hidradenitis suppurativa? If so, what treatments have been most effective for you? Let me know in the comments below!

10 Facts About Hidradenitis Suppurativa

According to the Hidrandenitis Suppurativa (HS) Foundation, HS is a chronic, painful skin disease that causes boils to form in the folds of the skin and has a profound impact on quality of life. Read out to find out 10 facts about this chronic autoimmune condition.

1. Hidradenitis Suppurativa (HS) is a common disease

Although HS was once thought to be a rare disease, peer-reviewed medical journals have stated that HS affects approximately 1-4% of the world’s population, when taking into account all the stages of the disease. This means that there are millions of individuals living with this skin condition.

2. It affects certain areas of the skin

HS commonly occurs in the areas of the skin that rub together, such as the armpits (axillae), groin, buttocks, and underneath the breasts. These areas are rich in apocrine glands, which produce sweat, and have many hair follicles which can get obstructed. These obstructed follicles will then progress into pus-filled abscesses and boils. The boils can feel like hard lumps, or clusters of inflamed lesions and sinus tracts (called ‘tunnels’) which give off chronic seepage and can scar.

3. HS is classified into three stages

HS is classified into three stages called Hurley Staging. This classification method allows medical professionals to assign a severity level to HS. The three stages are:

  • Hurley stage I – a single lesion without a sinus tract (‘tunnel’) formation
  • Hurley stage II – multiple lesions or areas impacted, but with limited tunneling
  • Hurley stage III – multiple lesions involving an entire area of the body, with more extensive sinus tract formations and scarring.

Keep in mind that these stages don’t necessarily take into account disease activity, measure pain, or the impact on one’s quality of life.

4. There are several risk factors

The exact cause of HS is unknown. However, experts believe that the condition is connected to hormones, genetics, and autoimmune issues. HS is not caused by an infection or poor hygiene, and it isn’t contagious.

Though the exact cause isn’t known, there are a number of risk factors that can increase one’s likelihood of developing the disease, including:

  • Sex – Women are about three times more likely to develop HS than men.
  • Age – HS most commonly occurs in women between the ages of 18 and 29. It rarely occurs before puberty, though individuals who develop the condition at an early age may be at an increased risk of developing more widespread disease.
  • Family history – It’s believed that inherited genes may play a role.

5. Lifestyle factors also impact the disease

There are also lifestyle factors that can impact the disease, including:

  • Obesity – Several studies have shown a correlation between being overweight and HS. This may be due to increased friction on one’s body and being more prone to excessive perspiration.
  • Smoking – Smoking tobacco has been linked to HS as well.

As a result, it’s recommended for patients to maintain a healthy weight and to refrain from smoking.

6. HS can cause various complications

Persistent HS, especially when severe, can cause a number of complications, including skin infections and scars. The scarring can also interfere with lymph drainage, which can result in swelling in the arms, legs, or genital region. Sores and scar tissue can also restrict one’s movements, or make it too painful to move, especially when the disease impacts the armpits or groin area.

7. HS can also impact one’s mental health

HS can also impact one’s self-esteem and well being. For example, the location of the skin lesions, as well as issues like drainage, scarring, and malodorous smell can cause embarrassment, and make patients reluctant to go out in public or engage in activities that may reveal their skin, such as swimming. The resulting social isolation can lead to overwhelming sadness or even depression. In fact, many patients with HS go undiagnosed for years because they are too ashamed to speak with a health care provider about their symptoms.

8. HS occurs in tandem with several conditions

According to the HS Foundation, research has found that certain health conditions (called ‘comorbidities’) commonly occur in tandem with HS. These conditions include metabolic syndrome, polycystic ovarian syndrome (PCOS), diabetes, inflammatory bowel disease, heart disease, acne, and more. HS is sometimes referred to in other countries as ‘acne inversa’, although it isn’t a type of acne.

9. There is no cure, but treatments can help

Treatment for HS depends on what clinical stage a patient is in and the severity of their condition. Mild HS is treated with antibacterial soaps, anti-inflammatory medications, and warm compresses. It’s also recommended to wear loose-fitting clothing. More severe forms of the disease may require antibiotics, oral retinoids, anti-inflammatory drugs, corticosteroids, hormones, and TNF-alpha inhibitors. Other treatments include laser hair removal, radiation therapy, carbon dioxide laser therapy and surgery to remove the affected area.

10. There is hope

If you or a loved one has been diagnosed with Hidradenitis Suppurativa, visit the Hope for HS website, which has an extensive library of patient resources, including information about wound care and listings for nationwide support groups. The organization also lists out clinical trials that patients can participate in, as well as recent research and news items, so that you can stay on top of the latest developments about the disease.

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