Hormones and Hidradenitis Suppurativa Flares
Some people with hidradenitis suppurativa (HS) find that their condition flares around the time of their period or along with other hormonal shifts. If this sounds familiar, you may be wondering: Is my HS caused by my hormones? Not necessarily.
Most people with HS don’t appear to have abnormal sex hormone levels, and hormone testing isn’t routinely used when diagnosing the condition.
To learn more about hidradenitis suppurativa, myHSteam spoke with Dr. Alexa Kimball, a professor of dermatology at Harvard Medical School. Dr. Kimball is also the CEO and president of Harvard Medical Faculty Physicians at Beth Israel Deaconess Medical Center in Boston, Massachusetts.
“Flares are a really common problem for patients,” Dr. Kimball said. “[Symptoms] range from one nodule or area that is red and inflamed in a place that is just incredibly problematic, to people who are having multiple nodules in multiple places.”
No, having HS does not mean your hormones are imbalanced. Elevated levels of androgens in the blood haven’t been consistently found in people with HS.
However, research does suggest a link between HS and hormones.
HS is a complex inflammatory condition that involves changes in hair follicles and the immune system. Genetics, hormones, metabolism, and other factors may also play a role.
One proposed explanation is end-organ androgen hypersensitivity — heightened local sensitivity to androgens even when blood hormone levels are normal. This could help explain why hormones may influence HS without a measurable hormone imbalance.
Blood tests that measure hormone levels aren’t routinely used to diagnose HS.
Antiandrogen medications may still help some people with HS. These medications reduce or block the effects of androgens, which may be useful when hormones appear to influence flares.
While testing isn’t standard, you should raise the topic of hormone testing with your doctor if you notice signs of polyendocrine metabolic ovarian syndrome (PMOS). This condition — formerly called polycystic ovary syndrome (PCOS) — is directly linked to hormonal imbalances and is more common among women with HS, according to the International Journal of Women’s Dermatology.
Signs you should talk to your doctor about hormone testing include:
HS is far more common among women, according to JAMA Dermatology. Research suggests a link between HS flare-ups and sex hormones, like estrogen and progesterone.
Hormones may affect HS in different ways throughout life. HS often begins after puberty, and some women notice flares around their menstrual periods, according to the Journal of Drugs in Dermatology.
Symptoms during menopause can improve, stay the same, or get worse. The impact of pregnancy on HS is more variable — some people may find their symptoms improve, stay the same, or get worse while pregnant.
HS can develop in people of any age, but it tends to start after puberty, usually before age 40. Rarely, it occurs in children under age 11. In some cases, early-onset HS may be linked to hormonal differences or a family history of the condition.
Some people experience HS symptom flare-ups around their menstrual cycle as hormone levels fluctuate. Decreasing levels of estrogen and progesterone may be related to these flares, but the connection remains uncertain.
In one survey, nearly 77 percent of 266 respondents reported worsening HS symptoms around their periods. Other studies have reported that 43 percent to 63 percent of women with HS dealt with flares around their periods. Most women who experienced flares reported they occurred the week before they got their periods.
How a person experiences HS during and after pregnancy varies greatly. “Unfortunately, we can’t really predict,” Dr. Kimball explained. “Some people get better, some people get worse, and some people don’t change.” The postpartum period can also be problematic, Dr. Kimball noted, due to hormonal fluctuations.
A systematic review of eight studies backs up Dr. Kimball’s observations. About 24 percent of women reported their HS improved during pregnancy, while around 20 percent had their HS flare while pregnant. Postpartum HS flares are also common — 60 percent of women with HS experienced a flare during the postpartum period.
For some, symptoms of HS change during menopause. Among 43 survey respondents who answered the menopause question, just over 44 percent reported no change in symptoms, while nearly 40 percent reported worsening symptoms.
While some myHSteam members report relief when entering menopause, others see their symptoms continue or worsen: “I had a radical hysterectomy where everything was removed when I was 40, and I still have bad flare-ups regularly. I am now 62!”
Because hormones may influence HS, your doctor may recommend hormone therapy as a treatment option.
Hormonal treatments may reduce HS symptoms in some people.
Dr. Kimball believes hormonal therapy can be a good treatment option for HS, but it’s often underutilized. “Hormonal therapy, for women with mild to moderate hidradenitis suppurativa, offers hormonal rebalancing,” she said.
For some, certain types of hormonal therapy may be more helpful than others. Limited evidence suggests that combination estrogen-progesterone contraceptives may be associated with better HS control than progesterone-only contraceptives. However, more research is needed to understand how contraceptive type affects HS.
Some hormonal treatments used for HS should not be taken during pregnancy because they may harm a developing baby. If you are pregnant, planning to become pregnant, or breastfeeding, talk with your doctor before starting or continuing hormonal treatment.
Dr. Kimball stressed the importance of gynecologists and dermatologists collaborating to find the best treatment options. Seeing your gynecologist each year can help ensure your dermatologist has the information needed to discuss hormonal treatment options.
Oral contraceptives can sometimes lessen HS symptoms. “Oral contraceptives … can bring people really nice improvements that can sometimes be managed with very low medication doses for a long period of time,” Dr. Kimball said.
“How people have used oral contraceptives in dermatology practice has changed a lot,” Dr. Kimball explained. “It used to be that many dermatologists didn’t feel comfortable using them. And that’s completely changed.”
Before prescribing birth control pills to treat HS, Dr. Kimball takes a medical history to understand any risk factors.
“If I have a patient for whom I think that an oral contraceptive is appropriate, I’ll ask them important questions. Have you had a stroke? Do you have clotting disorders in your family?”
“Have you had migraines? Are you a smoker? How old are you?”
Using contraceptives to treat HS involves coordination with gynecological care. “I’m very comfortable using contraceptives therapeutically as long as I feel like we’ve got the basics covered, and someone is monitoring their gynecologic care,” she said. She encourages women with HS to have a collaborative conversation with their dermatologist and gynecologist to explore hormonal contraceptives.
Spironolactone (Aldactone) is a prescription drug approved by the U.S. Food and Drug Administration (FDA) to treat high blood pressure, heart failure, and certain types of swelling. It’s sometimes prescribed off-label to treat HS, and it has an antiandrogen effect. A small study of women with HS found treatment with spironolactone reduced inflammation and pain.
Finasteride — sold under the brand names Propecia and Proscar — is an antiandrogen drug. It lowers levels of a hormone called dihydrotestosterone (DHT), which is made from testosterone. It’s usually used to treat conditions like male-pattern baldness but can also be used to manage HS.
Limited research has shown that finasteride may be helpful for reducing flare frequency and intensity and improving overall disease in people with HS. Overall, the treatment was well tolerated with few side effects, although most studies only looked at women with HS.
Metformin is an oral medication used to treat type 2 diabetes. Some evidence suggests that it may also be helpful for some people with HS, particularly those with PMOS or insulin resistance.
Small studies found that metformin appeared to improve symptoms and quality of life among people with HS. The treatment was well tolerated with few side effects. It’s important to note that many of those treated also had insulin resistance.
There are more HS treatment options than those discussed in this article. Speak with your healthcare provider to find the right fit for your symptoms.
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It’s always the week before is when it starts practicing for its big debut then once my cycle comes... I just want to curl up. I try to sleep as much as I can during that time.
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