Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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Living with HS stage 3. Anyone try Humira?

macdenise
macdenise

ive had HS for 4 years. I always seem to go into stage 3 pretty quickly. My HS is serve. I also have adult acne like I'm 12 years old! Recently, dealing with an arm pit area. Who knew that the arm pit was the worst to get over. I've had atleast 8 surges for the arm pit and 5 for 2 different areas. Wanted to try Humanira? But read about a lot of side effects. Anyone try Humira? did it work for you? I'm pretty young and I've had tons of surgeries for the last 4-5 years. Looking for something other than antibiotics. 

Faithlove
Faithlove
Oh wow no I have never tried Humira 8 surgeries is alot. Ive been having HS for about 12 years now and yes it never goes away I would have flare up all the time Ive been on antibiotics seem like forever on and off. I just had surgery under both arms with a plastic surgeon its been a week from yesterday but my right arm is draining alot and there's a really bad odor does anyone know if thats normal
elizabeth1993
elizabeth1993
Hi there,
Yes I've been on just about every medication known to man. I have HS as well as Crohns disease so its a double whammy for me unfortunately. My experience with humira was terrible both times. It didn't help much for either of my conditions. But what was worse was the weird reaction id have after it. It would cause this layer of thick white skin to form over my scalp that was extremely itchy and hard to scrape off. It looked like dandruff but worse because it legit looked like skin. It would peel into my hair when I would itch my head and it would make me look very dirty like I didn't have good hygiene. And it lasted for months after I stopped using Humira. I hated it. I will never use humira again. Hopefully your experience wont be as bad as mine.
unidentified
unidentified
I have been on Humira for years, weekly injections. It's the best thing that ever happened to me. I recently switched doctors because I moved, so I've been off it for a couple months and I've been able to see truly how good it was for me when I was on it (I just got an RX to get back on today). I've had no side effects other than a couple yeast infections. But Humira combined with kenalog injections directly into my lesions during flare ups had me in remission for at least two years. I would highly, highly recommend trying it. I'm sorry to hear about your surgeries. I've been able to avoid going under the knife, but it's taken me a very long time to find the right treatment plan for me. My suggestion is, if you have a doc who is recommending all of these surgeries, move on a find a dermatologist who has had success outside the knife. They're hard to find, but once you get a good one, it will change your life. Don't be discouraged, it will get better.