Written by Kathryn Shusta, as told to Kelly Wigginton
I’m 29 years old and have hidradenitis suppurativa (HS) on my thighs, stomach, and armpits. But the worst part is under my chest. Redness, irritation, and leakage may occur. And a lot of pain.
Biologics reduce that inflammation and discomfort to a level that I can manage.
I’m currently taking infliximab (Remicade) and my redness has decreased while I’m on it. If I have it, it’s not that serious. I want to make sure there is no flare. But for now, I’ll just get through the day without taking the prescribed painkillers.
My experience with HS and biologics has been quite the journey.
I experienced my first flare-up when I was 10 years old. It was a cyst in my butt.
My pediatrician had no idea what it was. However, he performed an incision and drainage (I&D) on me.
That means he cut it open to get rid of it. It’s a horrible experience I had as a child.
Shortly after the first cyst appeared, lesions appeared on my thighs and armpits. Usually they rupture and are expelled. Pus and blood will ooze out. This cycle continued for years. Before I graduated from high school, I had already accumulated a lot of scar tissue.
However, I still had no idea what was going on.
From the age of 10 to 17, my doctor mainly treated me for conditions like acne and boils. I went through several more cervical cancer treatments, took antibiotics for a short period of time, and tried birth control pills.
Nothing seemed to help.
When I was 17, I saw a new dermatologist. She took one look at me and diagnosed me with HS.
I started taking antibiotics right away. But they didn’t work at all. So I tried isotretinoin and accutane. Still, my inflammation didn’t go away, my skin became dry, and I became even more miserable.
After about a year, my dermatologist recommended trying a biologic.
I started adalimumab (Humira) when I was 18 years old and a college student. I continued it for 6 years. At first I noticed that the inflammation was reduced and my skin looked better. However, my flare didn’t improve as much as I expected. On top of that, I had a really hard time buying medicine at the pharmacy.
We also had to make sure everyone in the dorm understood that they couldn’t take the medicine out of the refrigerator because it had to be stored at a certain temperature. Otherwise, you could end up wasting thousands of dollars.
I also hated giving myself injections every week. Just thinking about it made me more and more anxious. I started postponing treatment for as long as I could. I ended up having to get my roommate to give me the shot.
In the end, Humira didn’t work for me. But everyone is different. Eventually, I worked up the courage to ask my doctor about other treatments.
I had several CO2 laser skin removal procedures when I was in my early 20s. Those sites still look great. But it took time to recover from them. I had to give up 18 months of my life to heal my skin and was trying to go to graduate school at the same time. I couldn’t keep it up.
I ended up undergoing four general surgeries, including skin excision and plastic surgery. In fact, my plastic surgeon told me I should stop taking Humira before surgery, which I think was bad advice, but he helped me safely wean myself off Humira. And after that I didn’t want to start drinking it again.
My old dermatologist strongly encouraged me to continue taking Humira even though I didn’t want to take it. In fact, she said it was my only drug choice. We broke up and found someone new. This doctor recommended Remicade (infliximab). Like Humira, it targets proteins that cause inflammation.
I was excited when I learned that this biologic can be used intravenously. This means that you will be treated by a medical professional through a vein in your arm. For some reason, it seemed much less scary than giving yourself an injection.
At first, I was given an IV drip every eight weeks. From the beginning, I noticed that my skin became less irritated. However, the symptoms worsened by the time of the next treatment.
My dermatologist recommended increasing the dose every 6 weeks. However, I moved before I could start this new treatment. This new location complicated things. You will need special approval from your health insurance to receive treatment in a different state than your doctor.
I didn’t get that permission, but I continued looking for a new dermatologist. During that time, I went over 4 months without any treatment. Very painful redness occurred one after another.
I didn’t know it at the time, but starting and stopping biologics is not a good idea.
As soon as I found a new doctor, I started Remicade. I tried high doses every 6 weeks. But it didn’t work. The dermatologist said I might have a buildup of antibodies. At this time, your body develops immunity to the drug. Blood tests showed she was right.
So my doctor started prescribing methotrexate along with Remicade. It is a drug that changes the way the immune system works. So far, biologics seem to be working better.
A severe HS flare leaves me exhausted and bedridden. Every move is a challenge. However, such episodes do not occur often in “Remicade”.
I still experience redness a few times each month, but it’s usually not bad enough to interfere with my daily life. That may not seem like a big deal. But as adults, it’s important to be able to run errands, go to work, do laundry, and make dinner.
Perhaps more importantly, the less severe HS means I can still do the things I actually want to do. You can play with friends, go for a walk, or go on vacation.
As of now, I am receiving an IV drip every 4 weeks. A nurse comes to my house. She sits with me for about 4 hours. I still prefer Remicade to Humira. But now more side effects occur on the day of treatment. My dad calls me “I.V. Hangover.” Afterwards, you may get a headache and fall asleep for a while. And I’m always hungry.
I am grateful that the treatment has helped, but I still have more symptoms than I expected. I will discuss next steps when I see my doctor in a few months. I don’t know if there are other biologics that might be more effective, but unlike when I was younger, I’m not afraid to ask.
https://www.webmd.com/skin-problems-and-treatments/features/hs-biologic?src=RSS_PUBLIC