What I Wish I Knew About Hidradenitis Suppurativa Treatment

Imagine skin wounds painful enough to make sitting down difficult and leaky enough that you need to apply bandages every time you leave the house. That’s the reality for Imani Futrell, who lives with a severe case of hidradenitis suppurativa (HS).

This chronic, inflammatory skin condition causes skin lesions ranging from hard bumps to pus-filled abscesses.

“The pain feels like a constant stinging in my armpits, groin area, and buttocks region. Those spots can be very tender and sensitive,” Futrell told Health. “The pain can shoot out anywhere, any time. When it throbs, that means a lesion is usually ready to drain.”

As difficult to manage as that seems, Futrell says it’s rare she has to cancel plans because of an HS flare. She has plenty of tricks for symptom management. In fact, she’s made it a point to share those tips and tricks widely, becoming an HS influencer on social media and a patient speaker at HS conferences.

“Being able to speak about my HS makes me feel so good,” she said. “Looking back, the biggest thing I wish I knew about HS is you’re not alone.”

What do you wish you had known sooner about managing your flare-ups? 

Futrell: My condition started when I was in college—a time when I was generally neglecting my health. Ramen, Nutella, and Reese’s were staples in my diet.

Although I don’t believe my hidradenitis suppurativa flare-ups are as strongly linked to my diet as they are for others, I’ve noticed a few patterns over time. Peanut butter flares me up. Dairy can also be a flare, so I stay away from milk. I don’t restrict myself too much, but I know to be mindful of what I eat.

What do you wish you had known about assembling a care team?

Futrell: I wish I would’ve been able to see an HS specialist sooner. I didn’t know this type of specialist existed until my dermatologist (a doctor who specializes in conditions of the skin, hair, and nails), who had primarily been managing my care, recommended one.

My HS specialist helped me realize there are so many professionals willing to help treat people with hidradenitis suppurativa. She recommended a new injection that I’m about to start and the clobetasol steroid cream (sold under brand names like Clobex and Embeline) previously prescribed by my dermatologist.

It’s reassuring when providers offer the same advice. Admittedly, learning all about this condition from a dermatologist whose skin didn’t look like mine took me for a turn. But I knew I had to put my trust in someone. Luckily, it worked, and I was later able to compare her treatment plan with the HS specialist’s plan and confirm they were the same.

What do you wish you had known about the treatments available to you?

Futrell: Some HS treatments will work until they don’t. For me, an example of that is minocycline (sold under brand names like Dynacin and Minocin), one of the first pills I was prescribed for HS.

I’ve learned that trial and error is okay. It’s hard when you don’t know if a new soap or a new steroid cream is going to burn instead of soothe your skin, but you just have to give it a try anyway.

I’ve applied that same mindset to more systemic treatments, including the injectable biologics Humira (adalimumab) and Bimzelx (bimekizumab-bkzx). I’m nervous that Bimzelx, which I’m about to start, isn’t going to work. But what do I have to lose? I’d asked myself that same question before pursuing surgery to close up some of my HS wounds and fix skin damage in areas affected by persistent flares. Ultimately, that surgery offered me some pain relief.

What do you wish you had known about getting surgery for HS?

Futrell: The recovery was harder than I thought. I thought I was going to go back to work the same day.

I’m so used to being independent and doing things for other people. I didn’t accept I would need help. I wasn’t allowed to move my left arm, so I needed lots of help if I wanted to heal without my stitches breaking.

What do you wish you had known about what life would be like with this condition?

Futrell: You are not alone. I know it can seem like that sometimes. But I’ve learned there are many people here to support you. I recommend checking out resources like HS Connect and The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID).

My advice to anyone with HS like mine is to be open to new treatment suggestions but to always make your own decisions. I want anyone supporting or treating someone with HS to know that listening to us means the world.

I’ve had many battles with HS, but I know I’m going to win the war.