Hidradenitis suppurativa (HS) is a skin condition that’s treatable and not contagious. It causes painful bumps to form under your skin, often in places where skin rubs together, like your armpits or groin. Over time, repeated inflammation can lead to tunnels forming under your skin, linking areas where you’ve had abscesses or lumps. They are also called sinus tracts or draining tunnels. If you have moderate to severe HS, one of the newer biologic medications approved to treat it, Cosentyx® (secukinumab) is a treatment option you can explore.
Biologics are medicines made from living cells and are used for all sorts of health issues. An example is insulin, a biologic used to treat diabetes. The biologics used for HS target specific parts of your immune system. They block proteins that cause inflammation, which can reduce the inflammation that leads to HS symptoms. Cosentyx targets a protein called IL-17A, so it is called an IL-17A inhibitor. You get it as a shot under your skin, and it can be used whether or not you have tried other biologics before.
Knowing about this treatment can be especially important for Black patients. HS is three times more common in Black people than in white people. However, Black patients often get diagnosed later and wait longer to see a dermatologist. Black patients are also more likely to have severe HS when they are finally seen. There weren’t enough Black patients in HS studies to get a true understanding of how well the medications work for Black patients.
In this guide, we’ll dive into how Cosentyx works, what to know about when you are considering it as a treatment for your — or your loved one’s — HS, and how to advocate for the treatment you need and deserve to see relief and live a better quality of life.
Medication is an important part of HS treatment. Medications include antibiotics to fight infection and inflammation, anti-inflammatory medicines, hormone therapy, and biologic drugs which work on your immune system.
Biologics are medicines made from living cells. Cosentyx is a type of biologic called a monoclonal antibody. Monoclonal antibodies are designed to act like the antibodies your body makes naturally, which recognize and attach to a specific target. For HS, these medicines go after particular parts of your immune system. They block certain proteins that cause inflammation, which then helps decrease the inflammation that causes HS symptoms.
If you have moderate to severe HS, biologics can help get active inflammation under control. Biologics may Currently the treatment guidelines for HS include three biologics for moderate to severe HS: Humira (adalimumab), Cosentyx (secukinumab), and Bimzelx (bimekizumab).
Each of these medicines tackles inflammation in a slightly different way. Humira targets TNF-alpha. Cosentyx blocks IL-17A. And Bimzelx goes after both IL-17A and IL-17F. Cosentyx can be used whether or not you’ve tried another biologic before. In the main studies on Cosentyx, about a quarter of the patients had already used a biologic, and the rest hadn’t. Cosentyx helped improve their HS symptoms regardless of their past treatment.
Cosentyx is approved by the FDA to treat adults and children ages 12 and up who have moderate to severe HS. You don’t have to try other biologic medicines before taking Cosentyx. Part of advocating for good care is making sure that your doctor considers all options. So if they do not bring up Cosentyx, ask them if it could be helpful. They’ll think about how severe your HS is, whether other treatments have been helpful, your general health, and any other medicines you’re currently taking.
Your immune system makes a natural protein called IL-17A that helps manage inflammation. If you live with HS, your body has higher levels of IL-17A in the areas of your skin where your symptoms show up. Cosentyx works by finding and attaching to IL-17A. This stops IL-17A from sending signals that cause inflammation. By doing this, Cosentyx can help lower the inflammation and ease the symptoms of HS.
Cosentyx is given as a shot just under your skin. You’ll usually start with one shot every week for the first five weeks. After that, you’ll typically switch to one shot every four weeks. For adults, if that’s not working well enough, your doctor might have you take a shot every two weeks instead.
Cosentyx comes in prefilled injection pens and syringes. Your provider should give you specific instructions and show you or your caregiver how to give the shot at home. Adults may give themselves Cosentyx after they’ve been properly trained. For children, an adult caregiver should prepare and give the shot after being trained. Your doctor will figure out the best dose and schedule for you.
Cosentyx was studied in two big clinical trials of 1,084 adults who had moderate to severe HS. On average, the people in the studies had been diagnosed with HS for about seven years. They all had at least five inflamed bumps and HS in at least two different body areas. About two-thirds were given Cosentyx, and the other third were given a placebo (an injection that looked like the Cosentyx injection but did not contain the drug).
After 16 weeks, roughly 4 out of 10 people on Cosentyx saw a major difference: their abscesses and inflamed bumps dropped by at least half, without an increase in abscesses or draining tunnels. For comparison, only about 3 out of 10 people who didn’t take the drug saw that kind of improvement. The studies continued for a year, and people who improved while taking Cosentyx generally stayed better all the way through week 52. They also reported less skin pain by week 16, which continued through the end of the year-long studies.
Possible side effects include:
Because Cosentyx works by lowering the activity of your immune system, taking it increases your risk for infections, some of which can be serious.
If you notice any signs of an infection, call your doctor right away. Signs include:
If you have any of these signs of a serious allergic reaction, get emergency help right away:
Cosentyx can also cause inflammatory bowel disease (IBD), like Crohn’s disease or ulcerative colitis, or, if you have an existing IBD, it can worsen it. If you get new or worsening diarrhea or stomach pain, tell your doctor.
You should also let your doctor know if you notice new or worsening red, itchy, dry, cracked, or blistered skin, because Cosentyx has caused severe eczema-like skin reactions.
Before you and your doctor decide on Cosentyx, let them know if:
Cosentyx doesn’t have many known direct interactions with other medicines. Still, make sure your healthcare provider knows about everything you take, including prescription and over-the-counter medicines, vitamins, and supplements.
Drug interactions: There are no known side effects of Cosentyx that only affect Black people. Certain health conditions that are more common in Black Americans may be important to consider. For example, Cosentyx can increase your risk of infection, and diabetes can also make it harder for your body to fight infections. If you have diabetes, talk with your doctor about what that may mean for you and Cosentyx.
The research gap: Even though HS is three times more common in the Black community than in white individuals, Black patients haven’t been included in enough HS research. The two main studies of Cosentyx included 1,084 adults, but only 86 — about 8% — were Black or African American. The studies did not report separate results showing how well Cosentyx worked or what side effects occurred specifically in Black participants. That doesn’t mean Cosentyx isn’t good for Black patients or that it works differently for us. It means we don’t have enough information from these studies to know whether there are meaningful differences.We need more research that includes enough Black patients to answer those questions fully.
Your pain level: Research and history shows us that pain experienced by Black patients’ is not understood or treated with the same care by many people in the medical field. . And research has found that Black patients with HS are four times more likely than non-Black patients to have “severe” pain from it, and are more likely to say that they are not satisfied with how their HS pain is managed. You deserve relief if pain is a significant part of living with HS. Be sure to speak up about your level of pain, and get specific. Is it making it hard to sleep? Does it stop you from doing work, moving your body, or doing what you need to do? Is it affecting your mood? How often do you notice it? Ask your doctor what you can do or take to manage your pain until Cosentyx is managing your HS well enough to lower it.
Research has found that HS is more common among Black people and women, and one U.S. study found that it was about three times as common among Black women as white women. But there is little large-scale research focused specifically on Black women. Scientists still don’t know exactly how many Black women in the U.S. have HS, why HS is more common in Black people, or why it is more common in women in general. Hormones do appear to play a role in HS. Some women notice that their symptoms change around their periods, during pregnancy, or at other times when hormone levels change.
If you’re thinking about taking Cosentyx and are pregnant, breastfeeding, or planning to get pregnant, tell your doctor. There isn’t enough information from people who have taken Cosentyx during pregnancy to know whether it poses a risk to a developing baby. It also isn’t known whether Cosentyx passes into breast milk or affects a breastfed baby. It is important to talk it over with your dermatologist and your OB/GYN when you’re deciding on your HS treatment.
Your symptoms: Before your appointment, write down (or ask a loved one to write down) a few things: how long you have had bumps, abscesses, or tunnels, where they tend to appear, and how often they return. Since HS can flare up and then calm down before you see the doctor, take photos when your symptoms are at their worst and bring them to your appointment. If your provider does not suggest HS as a possibility, ask directly: “Could this be hidradenitis suppurativa?” If you feel your concerns aren’t being heard or your treatment plan isn’t helping, it’s a good idea to get a second opinion from another doctor.
Your past treatments: Let your doctor know what treatments — if any — you’ve tried before and whether they helped. You don’t have to try another biologic before taking Cosentyx, so ask about all of your options if your current treatment isn’t doing enough.
Infections and TB: Because Cosentyx changes how certain proteins in your immune system work, it can also make you more likely to get infections. Tell your provider about any infections you have now, infections that keep coming back, or if you have had TB or been in close contact with someone who has it. Your provider should test you for TB before you start Cosentyx.
Inflammatory bowel disease: Tell your doctor if you have Crohn’s disease, ulcerative colitis, or another type of inflammatory bowel disease (IBD). Cosentyx can sometimes make existing IBD worse, and new cases have also occurred in people taking it.
Your pain level: Pain is an especially important issue for Black patients with HS. One study found that Black patients reported more severe HS pain and were less satisfied with how their doctors were managing it. Speak up if pain is a significant part of living with HS and get specific. Is it making it hard to sleep? Does it stop you from working, moving your body, or doing what you need to do? Is it affecting your mood? How often do you notice it? Ask your doctor what you can do or take to manage your pain now. People taking Cosentyx in clinical trials reported less skin pain by 16 weeks, and that improvement lasted through the end of the year-long studies.
Medication interactions: Before you start Cosentyx, tell your doctor about all the medications you’re taking. Cosentyx may change how your body processes certain medicines. If you take warfarin or another medicine that needs to stay within a specific level in your body, your provider may need to monitor you more closely when you start or stop Cosentyx.
Vaccines: Tell your doctor if you’re due for any vaccines. You shouldn’t get live vaccines, like the chicken pox vaccine, while taking Cosentyx, so your provider may recommend getting any vaccines that you need before you start treatment.
How to give the shot: Your provider should show you exactly how to give yourself Cosentyx before you do it on your own at home. If a family member or other caregiver will be giving you the shots, ask whether they can come to the appointment to learn how to do it, too.
Your insurance plan may require prior approval before it will cover Cosentyx, and some plans may require you to try a different medicine first.
If you have private insurance, Novartis has programs that may help with the cost if you qualify. Its Co-Pay Plus program can help eligible patients with out-of-pocket costs. If your insurance initially denies coverage, another program called Covered Until You’re Covered can provide Cosentyx for free for up to two years while you appeal the decision and try to get coverage.
Co-Pay Plus and Covered Until You’re Covered aren’t available to people whose medications are covered by Medicare, Medicaid, TRICARE, or other government programs. However, the Novartis Patient Assistance Foundation may provide Cosentyx at no cost to eligible patients with limited or no prescription insurance coverage who can’t afford their medicine. Learn more about savings and support for Cosentyx®
This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking any drug or commencing or discontinuing any course of treatment.
Cosentyx doesn't have any known side effects that only affect Black individuals. However, there are some health conditions and medications you should definitely talk about with your doctor. For example, if you have diabetes, it can be harder for your body to fight off infections, and Cosentyx can make you more likely to get infections. Having diabetes doesn't mean you can't take Cosentyx, but you need to talk about it with your healthcare provider.
We don't have enough research to know whether there are meaningful differences in how Cosentyx works for Black patients. Out of 1,084 people in the two main studies on Cosentyx and HS, only 86 (about 8%) were Black or African American, and they didn't share separate results showing how well Cosentyx worked specifically for those patients. This doesn't mean Cosentyx doesn't work as well for Black patients; it just means we need more research that includes enough Black participants to answer that question properly.
One study found that Black patients with HS reported more severe pain and were less satisfied with how their doctors were managing it. Don't assume that pain is something you have to live with. Tell your doctor how much pain you're feeling and how it's affecting things like your sleep, work, movement, and mood. Ask what can be done to help manage your pain now and in the long run.
HS disproportionately affects Black women, but there isn't a lot of research specifically focused on them. If you're pregnant, breastfeeding, or hoping to get pregnant, make sure to tell your doctor. We don't have enough information from people who have taken Cosentyx during pregnancy to know if it could harm a developing baby. Also, we don't know if Cosentyx gets into breast milk or affects a baby who is breastfed. Talk with your dermatologist and OB/GYN about when you're deciding on your HS treatment.
Enter your name and email to receive the download link.