Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected by hidradenitis suppurativa (HS), spoke on the surgical and therapeutic interventions she’s had for the management of HS.
Treatment for hidradenitis suppurativa (HS) can include surgeries to remove manifestations and ongoing therapeutic management with medications, said Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected by HS.
What treatments have worked and not worked for you in the management of HS?
I have had a total of 5 surgeries altogether, I had to think about it for a second. I've had 2 in each armpit and then one in the groin. The ones in my armpit have been successful so far. I had a procedure called a staged excision—I live by myself and wound care and postoperation recovery is kind of a concern of mine, because I have nobody else to take care of me and I have a crazy dog.
So, I have a dermatologist who's a specialist, and she came to me and said, both of your armpits are stage 3, and the disease is not really going to undo itself. There was a ton of scar tissue damage and she said, we could get it to stop, but if you do surgery and medicine, we're probably going to have a better pathway. So, I said to her, I live alone though and doing such a big procedure and all the wound care after is a big deal.
So, we did a staged excision, where it took 2 procedures to remove all of it from each of my arms. So, it was 2 each. She went in and got the bulk of it on the first and then went back in after it healed and got the rest of it. So, I had nice-sized surgery areas, but they weren't gaping and they were manageable for me to take at home. She left it to heal by a process called secondary intention, where there’s no stitches, there's no skin graft, there's no wound vac—it’s dressing changes and so that a nice healthy layer of scar tissue kind of builds up and prevents the disease from recurring.
She did it in her office and it was under a local anesthetic so I was awake the whole time. I actually watched it—it was just so liberating, like that last snip when she cut it out of my body to have it gone after it spent a decade destroying this area. Just to see it gone, it was like, bye bye, please go.
So, yeah, I've had 2 of those on each armpit. So, a total of 4 on my armpits. She wants to do more work on my groin and I am just needing a little bit of a break. That process on all 4 surgeries took about a year and it's a lot of wound care, so I just needed a break.
As far as the other treatment goes, I take spironolactone every day and that seems to have not cured my HS, but it definitely has helped with the premenstrual flares. So, about a week beforehand, my HS kind of announces that my cycle is coming and it's usually in the form of an abscess or just heavier activity. And the spironolactone has really helped with that. So, that is what I'm taking.
I am scheduled to start Cosentyx (secukinumab) really soon. I was in the original medical study for Humira (adalimumab) and then I went off of it because it was trying to conceive and back then they didn't know enough about Humira to deem it safe during pregnancy or not. So, I went off of it while I was trying to conceive, and then I went back on it again, and I had success the first time and the second time I did not. I had a couple of little gaps with health insurance in between and I was able to get back into a specialist now—she's the one that's done the surgeries and we're getting ready to start Cosentyx.