By Kathryn Shusta, as told to Keri Wiginton
I’m 29, and I have hidradenitis suppurativa (HS) on my thighs, stomach, and armpits. But the worst spots are under my breasts. I’ll get redness, irritation, and drainage. And lots of pain.
Biologics bring down that inflammation and discomfort to a level I can manage.
Right now, I take infliximab (Remicade), and I’ve had fewer flares while on it. When I do have one, it’s less severe. I’d like to have no flares. But for now, I’ll settle for getting through the day without taking prescription pain medication.
My experience with HS and biologics has been quite a journey.
I had my first flare when I was 10. It was a cyst on my butt.
My pediatrician had no idea what it was. But he gave me an incision and drainage (I&D), which
means he sliced it open to get rid of it. That’s a horrible experience to have as a child.
Soon after that first cyst, lesions showed up on my thighs and armpits. Generally, they would burst and drain. Pus and blood would ooze out. This cycle continued for years. I already had a lot of scar tissue buildup before I’d even graduated high school.
Yet I still didn’t know what was going on.
From ages 10 to 17, my doctors mostly treated my symptoms like acne or boils. I had a couple more I&Ds, took short rounds of antibiotics, and tried birth control pills.
Nothing seemed to help.
I met with a new dermatologist when I was 17. She took one look at me and diagnosed me with HS.
I started taking antibiotics right away. But they didn’t work at all. Then I tried isotretinoin, or Accutane. That didn’t help my flares and it dried out my skin, which made me even more miserable.
About a year later, my dermatologist suggested I try a biologic.
I started adalimumab (Humira) when I was 18 and in college. I was on it for 6 years. Initially, I noticed less inflammation and my skin felt better. But my flares didn’t improve as much as I’d hoped. On top of that, I had a really hard time getting my medicine from the pharmacy.
And the drug had to be kept at a certain temperature, so I had to make sure everyone in my dorm understood that they couldn’t take it out of the refrigerator. Or that’s thousands of dollars down the drain.
I also hated giving myself a shot every week. Just the thought of it filled me with increasing anxiety. I started putting off treatment for as long as I could. Eventually, I had to get my roommate to give me the shot.
In the end, Humira just wasn’t working for me. But everyone is different. Eventually, I built up the courage to ask my doctor about other treatments.
I had a couple of CO2 laser skin removal procedures when I was in my early 20s. Those sites still look great. But it took a while to recover from them. I basically had to give up 18 months of my life to let my skin heal, and I was trying to go to grad school at the same time. I couldn’t keep going through that.
I ended up having four general surgeries, including skin excision and plastic surgery. The plastic surgeon actually said I should stop taking Humira before my procedure, which I think was wrong advice, but he helped me wean off it safely. And after that, I didn’t want to start taking it again.
My old dermatologist strongly urged me to stay on Humira even though I didn’t want to. In fact, she said it was my only drug choice. We parted ways, and I found someone new. This doctor suggested Remicade (infliximab). Like Humira, it targets a protein that causes inflammation.
I was excited when I found out this biologic would be an IV infusion. That meant I’d have a medical professional give me my treatment through a vein in my arm. For some reason, that seemed a lot less scary than giving myself a shot.
At first, I got my infusion every 8 weeks. I noticed less inflammation in my skin right at the beginning. But my symptoms would flare before the next treatment.
My dermatologist suggested I go to a higher dose every 6 weeks. But I moved before I could start this new regimen. This new location complicated things. I’d need special approval from my health insurance to get my treatment in a different state than my doctor.
That approval never came, but I continued to search for a new dermatologist. In the meantime, I went without treatment for more than 4 months. I had one extremely painful flare after another.
And I didn’t know it at the time, but it’s not a good idea to start and stop biologics.
I started Remicade as soon as I found my new doctor. I tried the higher dose every 6 weeks. But it wasn’t working. My dermatologist mentioned I might’ve built up antibodies. That’s when your body develops an immunity to your medication. A blood test showed she was right.
So, along with the Remicade, my doctor now prescribes methotrexate. That’s a drug that changes how the immune system works. So far, it seems to be helping my biologic work better.
A serious HS flare leaves me exhausted and bedridden. Any movement is a challenge. But those episodes happen a lot less on Remicade.
While I may still get a couple of flares every month, they’re usually not bad enough to knock me off my daily routine. That may not seem like a big deal. But as an adult, it’s important that I can still run errands, go to work, do laundry, make dinner.
Maybe more importantly, less severe HS means I can still do the things I actually like to do. I can hang out with my friends, go on walks, or take a vacation.
For now, I get my infusion every 4 weeks. A nurse comes to my house. She sits with me for about 4 hours. I still prefer Remicade to Humira. But I get more side effects on treatment day now. My dad calls it my “infusion hangover.” I may get a headache and sleep for a while afterward. And I’m always starving.
I’m thankful my treatment helps, but I still have more symptoms than I’d like. I’ll talk about next steps when I see my doctor in a few months. I don’t know if there are any other biologics that may work better, but unlike when I was younger, I’m not afraid to ask.
