Frequently Asked Questions About Hidradenitis Suppurativa

Being diagnosed with hidradenitis suppurativa (HS) can be overwhelming and lead to many unanswered questions. You may be wondering if your new symptom requires a visit to your doctor. Maybe the thought of paying for your new medicines or treatments leaves you with worry or unease.

In fact, you do not need to be newly diagnosed to have questions about HS. Living with a chronic disease such as HS means learning to manage a new condition that can impact every aspect of your life. It is no wonder why you may have questions about HS along your journey of living with it.

When should I see the doctor about this?

Finding a supportive and nonjudgmental doctor who listens to your questions is important at all stages of your journey. A strong relationship with your doctor is a good starting point to make sure all your questions and concerns about HS are answered.

The first doctor you will likely see on your path to diagnosis of HS is your family doctor. While this doctor is highly qualified, they will likely not have in-depth training on skin conditions. A dermatologist is a skin specialist with many additional hours training and experience related to issues specific to the skin. Once your family doctor determines you have a skin condition and it is likely HS, they will refer you to see a dermatologist.

Since the symptoms of HS can vary so much from person to person, there is not one answer as to when you should see your doctor. If you are concerned about any sores or painful lesions on your body, be sure to let your doctor know.

Is feeling distressed and emotional about HS a normal feeling?

HS is a painful condition that is not just skin deep. The appearance of the skin lesions alone can make you feel embarrassed or distressed. You may feel that some people in your life do not understand your condition, making your daily living that much more difficult.

You are not alone in feeling this way. Some studies have found that HS can have a negative impact on daily living. Of those studied, more than half have said that HS has a negative impact on their daily life.¹

Deep distress may occur for some with HS. Feelings of hopelessness and depression can lead to an increased risk for suicide among those with the condition. If you have feelings of hopelessness or thoughts of suicide, seek medical attention immediately – you are not alone.²

What are my treatment options?

Although there is not a cure for HS, there are treatment options available. HS can be difficult to treat and there is no 1-size-fits-all treatment. The choices available are used to decrease symptoms, relieve your pain, and heal your skin lesions.³

Your doctor will be able to give you more information on the treatment choice best for you. In general, options may include:⁴

• Lifestyle modification. If you are overweight, your doctor may advise you on methods to achieve and maintain a healthy weight. If you smoke, you can be provided ways to stop.
• Medicines. These may include antibiotics, creams to apply directly to your skin, or drugs used to treat the immune reaction inside your body.
• Comfort measures. Methods such as warm compresses and over-the-counter pain drugs may be recommended by your doctor to help manage your pain.

How do I afford the treatment options?

A survey by the National Center for Health Statistics found that about 8 percent of adult Americans do not take all their medicines as prescribed due to the cost of them.⁵

Talk to your doctor to make sure the medicines you are prescribed are covered fully by your insurance. Sometimes drug companies offer assistance to help pay for medicines. Finally, try shopping around at various pharmacies to make sure you are getting the best price for your medicines.