A Skin Mystery – Why a Disease Called Hidradenitis Suppurativa (HS) Is So Hard to Identify
Posted: November 20, 2023 | Word Count: 2,021
Approximately 1 in 100 people are believed to be living with hidradenitis suppurativa (HS), a chronic, often painful inflammatory skin condition that can become more severe over time, if not treated.1,2 Because HS may be a result of your immune system malfunctioning, it can be hard to pin down a diagnosis.3,4
Those living with HS commonly have recurring, painful bumps or boil-like nodules, mainly in areas of the body where skin meets skin.2 These lumps can become sores or abscesses that may leak, carry odor and leave scars.1,2 Despite these symptoms, there are a number of reasons why people don’t get the help they need, such as embarrassment and shame, misdiagnosis and difficulty getting to the right healthcare provider.5,6
“HS is one of the most devastating dermatological conditions, and there’s a high unmet need for patients in terms of accelerating diagnosis and expanding treatment options,” says dermatologist Vivian Shi, M.D., FAAD, Associate Professor in the Department of Dermatology at the University of Arkansas for Medical Sciences (UAMS).7,8
Shame & Embarrassment Stand in the Way
People with HS are often too embarrassed to talk about their symptoms. Dr. Shi shared, “Many patients believe they caused their HS through lifestyle choices, but HS can occur due to genetic, hormonal, or environmental factors. The simple truth is HS can affect anyone.”3,4
HS is not contagious but has been reported to run in families.1,4 Dr. Shi highlights, “I’ve heard people express guilt of potentially passing HS on to their children or shame that they can’t maintain employment due to HS.”1,9
HS is Commonly Misdiagnosed
Several conditions resemble the symptoms of HS, making diagnosis difficult.4 For example, acne can resemble HS, but HS differs in the appearance of active lesions and location.2,4,10 HS generally appears in more intimate areas, such as under the breasts, in the armpit, or in the groin, whereas acne typically shows up on the face, chest and back and does not form sinus tracts or draining tunnels.2,10,11
Due to the intimate location of symptoms, sexually transmitted infections (STIs) are also a common misdiagnosis that can cause feelings of shame.2,4 “Some STIs have common symptoms to HS, including inflammation and pus, so it’s important to speak to your healthcare provider and rule this out,” said Dr. Shi.
Identifying the Right Healthcare Provider Can Be Tricky
On average, it may take people up to 10 years and seeing up to 10 doctors for their HS symptoms before getting a correct diagnosis.6,8 However, Dr. Shi noted she’s seen even longer delays, especially in rural or low socioeconomic urban areas: “I have encountered people who have gone a significant amount of their adult life without a diagnosis or who have had surgery on nodules and haven’t ever heard the term ‘HS.’”12
Dermatologists like Dr. Shi regularly diagnose and treat chronic skin conditions like HS.3 “Patients often visit a primary physician or urgent care with symptoms, but recent studies have shown that some primary care and OB/GYN providers reported feeling less confident in diagnosing and treating HS.13,14,15 It is critical for patients to self-advocate, track symptoms and seek a dermatology specialist for advanced care and maintenance treatment,” added Dr. Shi.
Navigating the Treatment Path
Once HS is diagnosed, treatment should be customized based on the individual’s medical history, needs and preferences.16 Dr. Shi highlights that managing HS requires a holistic approach, saying, “You have to understand the whole body and all the treatment resources available and consider using these in combination. I like to think of treating HS like playing a football game; you wouldn’t rely on just the quarterback — you need the whole team.”
Common treatments for HS include lifestyle modification, hormonal modulation, antibiotics, surgery and biologics.3 A new biologic treatment option, recently approved by the FDA for adults with moderate to severe HS, is Cosentyx® (secukinumab).17 Cosentyx is thought to treat HS from within by inhibiting interleukin-17A (IL-17A), a protein believed to play a role in the inflammation leading to HS symptoms.17,18
Although it can be challenging to get an accurate diagnosis and care for HS, support is available. Online resources and HS advocacy communities are great places to get information and connect with people living with the same condition. And most importantly, find a doctor who can help navigate HS and provide appropriate care.
To learn more about Cosentyx as a potential treatment option for HS, visit Cosentyx.com.
COSENTYX® (secukinumab) is a prescription medicine used to treat adults with moderate to severe hidradenitis suppurativa (HS).
IMPORTANT SAFETY INFORMATION
Do not use COSENTYX if you have had a severe allergic reaction to secukinumab or any of the other ingredients in COSENTYX. See the Medication Guide for a complete list of ingredients.
What is the most important information I should know about COSENTYX?
COSENTYX is a medicine that affects your immune system. COSENTYX may increase your risk of having serious side effects such as:
COSENTYX may lower the ability of your immune system to fight infections and may increase your risk of infections. Some people have died from these infections.
- Your doctor should check you for tuberculosis (TB) before starting treatment with COSENTYX.
- If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with COSENTYX and during treatment with COSENTYX.
- Your doctor should watch you closely for signs and symptoms of TB during treatment with COSENTYX. Do not use COSENTYX if you have an active TB infection.
Before starting COSENTYX, tell your doctor if you:
- are being treated for an infection
- have an infection that does not go away or that keeps coming back
- have TB or have been in close contact with someone with TB
- think you have an infection or have symptoms of an infection such as: fevers, sweats, or chills; muscle aches; cough; shortness of breath; blood in your phlegm; weight loss; warm, red, or painful skin or sores on your body; diarrhea or stomach pain; burning when you urinate or urinate more often than normal.
After starting COSENTYX, call your doctor right away if you have any signs of infection listed above. Do not use COSENTYX if you have any signs of infection unless you are instructed to by your doctor.
What are the possible side effects of COSENTYX?
COSENTYX may cause serious side effects, including:
Serious allergic reactions
Serious allergic reactions can occur. Get emergency medical help right away if you get any of the following symptoms: feeling faint; swelling of your face, eyelids, lips, mouth, tongue, or throat; trouble breathing or throat tightness; chest tightness; skin rash or hives (red, itchy bumps).
If you have a severe allergic reaction, do not give another injection of COSENTYX.
Inflammatory bowel disease
New cases of inflammatory bowel disease or “flare-ups” can happen with COSENTYX, and can sometimes be serious. If you have inflammatory bowel disease (ulcerative colitis or Crohn’s disease), tell your doctor if you have worsening disease symptoms during treatment with COSENTYX or develop new symptoms of stomach pain or diarrhea.
Severe skin reactions that look like eczema can happen during treatment with COSENTYX from days to months after your first dose and can sometimes lead to hospitalization. Your doctor may temporarily stop treatment with COSENTYX if you develop severe skin reactions. Tell your doctor if you have any of the following signs or symptoms: redness or rash; itching; small bumps or patches; your skin is dry or feels like leather; blisters on the hands or feet that ooze or become crusty or skin peeling.
The most common side effects of COSENTYX include: cold symptoms, diarrhea, and upper respiratory tract infections.
These are not all of the possible side effects of COSENTYX. Call your doctor for medical advice about side effects.
Before using COSENTYX, tell your doctor if you:
- have any of the conditions or symptoms listed above for infections.
- have inflammatory bowel disease (Crohn’s disease or ulcerative colitis).
- are allergic to latex. The needle cap on the COSENTYX Sensoready® pen, and 150 mg/mL and 75 mg/0.5 mL prefilled syringes contains latex.
- have recently received or are scheduled to receive an immunization (vaccine). People who take COSENTYX should not receive live vaccines. Children should be brought up to date with all vaccines before starting COSENTYX.
- have any other medical conditions and all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Keep a list of your medicines to show your healthcare provider and pharmacist when you get a new medicine.
- are pregnant or plan to become pregnant. It is not known if COSENTYX can harm your unborn baby. You and your doctor should decide if you will use COSENTYX.
- are breastfeeding or plan to breastfeed. It is not known if COSENTYX passes into your breast milk.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
5. Mac Mahon J, Kirthi S, Byrne N, et al. An update on health-related quality of life and patient-reported outcomes in hidradenitis suppurativa. Patient Relat Outcome Meas. 2020;11:21-26. doi: 10.2147/PROM.S174299.
10. Montero-Vílchez T, Sánchez-Díaz M, Martínez-López A, et al. Quality of life in patients with skin disease and their cohabitants. In: Jasneth M, Sage A, Medhane C, Eds. Health-Related Quality of Life. Rijeka: IntechOpen; 2021: Ch. 5.
11. American Academy of Dermatology Association. Hidradenitis Suppurativa: Overview [online]. Available at: https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-overview. [Last Accessed: October 2023].
13. Masson R, Shih T, De D, et al. Perspectives of obstetricians/gynecologists on hidradenitis suppurativa care: a survey study. Int J Womens Dermatol. 2022;8(4):e064. doi:10.1097/JW9.0000000000000064.
14. Snyder C, Chen S, Porter M. Obstacles to early diagnosis and treatment of hidradenitis suppurativa: current perspectives on improving clinical management. Clin Cosmet Investig Dermatol. 2023;16:1833-1841. doi:10.2147/CCID.S301794.
16. American Academy of Dermatology Association. Hidradenitis Suppurativa: Diagnosis and Treatment [online]. Available at: https://www.aad.org/public/diseases/a-z/hidradenitis-suppurativa-treatment. [Last Accessed: October 2023].
18. Kimball AB, Jemec GBE, Alavi A, et al. Secukinumab in moderate to severe hidradenitis suppurativa (SUNSHINE and SUNRISE): week 16 and 52 results of two identical, double-blind, placebo-controlled, phase 3 randomised trials. Lancet. 2023; published online Feb 3. Available at: https://doi.org/10.1016/S0140-6736(23)00022-3 [Last accessed: October 2023].