Updated: Sep 13, 2023
Hidradenitis is a complex disease and there is no one size fits all approach. For some patients, diet and obesity play a major role. Other patients are unable to gain weight due to the degree of active inflammation in the body at all times. It is associated with other medical problems, including tobacco abuse, arthritis and inflammatory bowel disease such as Crohn’s disease and ulcerative colitis and depression.
1. Things you can change.
a. Healthy diet: A diet based on fruits and vegetables with complex carbohydrates and lean meats can help you lose weight and has anti-inflammatory effects. Simple sugars found in bread, candy and juices are not good for you.
b. Smoking: Smoking is the number one risk factor for having hidradenitis and is the main reason people fail to improve or have worse disease. If you have HS, don’t start smoking, and if you smoke it is essential to quit.
c. Heavy alcohol use: Alcohol is a source of empty calories. Excessive drinking interferes with the function of prescribed medications and makes it more likely you will not improve.
2. Topical treatments.
a. Bleach baths/ Hibiclens: Patients with HS are not dirty! But they may be carrying around a heavy bacterial load due to the disease itself, open sores and drainage. Many patients have heavier amounts of staph on the skin, and it is difficult to eradicate these bacteria. We recommend diluted bleach baths to help dissolve the bacteria and find it superior to soaps and cleansers. Lowering your bacterial load also helps calm down your immune system. It is theorized that patients with HS over respond to normal bacteria, so patients have to take cleansing the skin very seriously.
b. Topical corticosteroids: Topical corticosteroids quiet the immune system, but they can thin the skin and lead to more bacterial growth. For this reason, we use them sparingly, usually not daily, and we recommend alternating with bleach baths and topical antibacterial agents.
c. Topical antibiotics: Different areas of the skin have different bacteria. We usually recommend clindamycin for above the waist (arm pits, breasts, neck) and metronidazole gel for the groin and buttocks, but these are not a substitute for bleach baths.
3. Hormone modulators.
a. Oral contraceptives/spironolactone: Obviously these are not recommended for men. Hormones do play a role in HS. It is almost never reported before adolescence. Oral contraceptives are generally very safe in patients under 35 who do not smoke and have no history of blood clots. Spironolactone is a medication for blood pressure that lowers testosterone levels. It should not be taken with other medications that raise potassium levels and should not be taken in patients with kidney disease. Otherwise, it is generally very safe and well tolerated. These adjustments tend to work best in patients with relatively mild HS.
b. Metformin: This medication is FDA approved for control of blood sugar in type II diabetes and the treatment of metabolic syndrome and polycystic ovarian syndrome. It is not fully clear how metformin helps HS, but it has both anti-androgenic properties and regulates blood sugar. Metformin can cause GI upset, especially when you start taking it, so we generally start with low doses and increase as tolerated with doses ranging from 500 mg to 2000 mg a day.
4. Antibiotics: HS is not an infection, but as stated above, lowering bacterial levels does help address inflammation. Oral antibiotics by themselves rarely make a big difference in moderate to severe disease but may help with other treatments and can help more mild disease. The most frequently prescribed oral antibiotics are doxycycline/minocycline, Bactrim (generic Sulfamethoxazole Trimethoprim), clindamycin and rifampin. Bactrim is a sulfur antibiotic and has a higher risk of severe, even fatal, allergic reactions. All antibiotics have side effects including decreased effectiveness of birth control pills and allergies. IV antibiotics can be used for severe disease and can help temporarily although this rarely results in sustained response.
5. Retinoids: Isotretinoin (Accutane) and Acitretin (Soriatane). Most studies show that isotretinoin, a drug FDA approved for severe acne, does not help HS, although there are special cases, particularly in patients with facial or scalp involvement, when it may be helpful. Acitretin can be helpful but cannot be used in women of childbearing age. Both of these medications cause birth defects if a pregnant woman takes the medicine, but acitretin stays in the body for up to several years and therefore cannot be safely used in women of child-bearing age.
6. Immunomodulators:
a. Humira (adalimumab): This is the ONLY FDA approved treatment for HS. Humira is a biologic agent, meaning it looks like a human antibody and it targets a specific protein in your body that contributes to the development of HS. It can be very helpful in the treatment of HS, but clinical trials showed used alone or with an antibiotic it rarely leads to dramatic improvement. We use this drug in combination with other treatments for moderate to severe patients. It can also help with psoriasis and the associated arthritis seen with HS.
b. Other biologics: Medications such as Remicade (infliximab) which is similar but can be dosed higher than Humira are also reported to help HS. Other biologics such as Kineret (anakinra), Ilaris (cankinumab) and Taltz (ixekizumab) have been reported to improve HS in small case reports, but these medications are very expensive and difficult to obtain. With the possible exception of Remicade, their safety and effectiveness in HS is still unknown.
c. Corticosteroids: High dose prednisone, methylprednisolone, dexamethasone and other steroids can be exceedingly helpful for HS, particularly when given IV. However, due to serious long-term side effects, these medications are generally used short term for the most severe cases.
d. Cyclosporine/methotrexate/azathioprine: these medications are designed to work in a similar slower fashion compared to corticosteroids. They have more modest results but may be used in combination with other medications. All of these medications have side effects including effects on the immune system and require regular monitoring.
7. Surgery: Surgery can be effective and curative for HS. Surgery for calm lesions in the axilla and breasts is often successful. In the groin, buttocks and medial legs, surgery can help but is at higher risk of complications and recurrence. Ideally, patients undergo surgery at a time when maximal medical control of the disease is obtained. This allows for the highest likelihood of success and the lowest risk of complications. Most surgeries are either closed with skin grafts or flaps (for better results) or allowed to heal in and left open. Dermatologists can perform unroofing procedures and excisions, but for large areas requiring flaps or skin grafts we generally refer to plastic surgeons. These large surgeries do require general anesthesia. Recovery after large HS excisions generally takes 3-6 months.
8. Clinical Trials available in Murray, KY: This is an exciting time for HS, as there are finally some FDA approved medications going for the indication of HS, as well as some cutting-edge investigative products. Hopefully soon there will be several medications indicated for HS. HS has been an undertreated disease, in part due to the lack of medications available for HS. I am glad to know that is changing. There are several clinical trials open and enrolling now that are available for participation, even here in Murray. You can get all the information regarding all trials by calling our office at 270-873-2274 or going to clinicaltrials.gov to find a study center at a location closer to you. If interested in more information someone from Kentucky Advanced Medical Research can talk to you about participation qualifications in an HS study that we may offer at this facility. You do not have to participate here or anywhere else. It is listed because it is now an option available to you.
To participate in a clinical trial here or anywhere else: you must qualify with the requirements of the study protocol to be eligible to participate. There are some pros of clinical trials: early access to cutting edge treatments, no charge for research visits, free medications, no co-pays, head to head studies (no placebo phase) and travel stipends. There are some cons as well: There are usually blood draws most visits, lesion assessments which make modesty somewhat impossible, a schedule of visits that must be adhered to, longer visit times in the beginning, placebo phases, and washout periods. You must usually be considered moderate to severe to participate, so if that is something you may be interested in just let us know.
HS is a very challenging disease to treat. We are here to help guide you and counsel you. Please let us know how you are feeling and share your concerns with us.