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Humira for Hidradenitis Suppurativa User Reviews

Rating: 4.3

Humira has an average rating of 4.3 out of 10 from a total of 26 reviews for the treatment of hidradenitis suppurativa. 35% of reviewers reported a positive experience, while 62% reported a negative experience.

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Reviews for Humira

Commonly mentioned side effects
  • Hea...
  • November 14, 2019

"I want to share with you all that I had hidradenitis under my both arms for 2 years, and I completely cured it with an elimination diet. My problem was potatoes from the nightshade vegetables. You can search for elimination diet on Google and learn how it works. Don't forget about the nightshades: potatoes, eggplants, peppers, and tomatoes. I am 100% sure that an elimination diet will help you get rid of this disease, and you will be free from it forever. God bless."

9 / 10
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113 Report
  • All...
  • Taken for 1 to 6 months
  • July 8, 2019

"My wife was put on Humira for HS. She was taking it for two months when she started to get what looked like ant bites on her hands and feet. The nurse practitioner who put her on Humira said that wasn't from Humira, so she kept taking it, but after her next dose, it exploded and got way worse. So after doing some research myself, I found out pustular psoriasis was one of the rare side effects. Here we are, two months after stopping taking it, and she's got all kinds of skin issues like contact dermatitis, severe pustular psoriasis which is only being controlled by steroids. She has lost 50% of her hair. Humira has ruined our lives."

1 / 10
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60 Report
  • BBa...
  • Taken for 1 to 6 months
  • September 15, 2018

"Have had Hidradenitis Suppurativa since childhood (before puberty) Stage 2 Hurley and... Colitis, IBD. No pain for me when injected in the tummy. I feel like Superman for 30 minutes after injection. I feel great. It has reduced lesions every time. The more I build up in my system, the fewer lesions there are occurring. I’m so happy I am on this drug. I delayed taking the drug after reading scary reviews. I’m glad I went ahead anyway. It has been great for me."

9 / 10
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64 Report

Frequently asked questions

  • Kiw...
  • Taken for 1 to 2 years
  • January 2, 2019

"Unfortunately, Humira made my HS worse rather than better. It was concentrated mostly in my groin area, with a few spots showing up sporadically under my arms. After injecting myself weekly for 15 months, I now have lesions that are uncontrollable in my groin and buttock area (including my outer hip area), around my breasts, traveling up my neck and head, and all around my face. I can't believe this is what I have to deal with now."

1 / 10
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54 Report
  • no...
  • Taken for 6 months to 1 year
  • September 25, 2018

"I have had HS for a number of years and was quite happy when I was finally put on Humira. I had such high hopes and was elated in January 2018 when I started taking this drug. During the first couple of months (I'm assuming because of the initial high dosage), I was completely clear of all HS signs. Since then, I have had infection after infection, my HS has gotten worse and never lets up now. I'm going to see my doctor today and ask to be removed from this treatment. Not only is my HS getting progressively worse, my psoriasis has also flared up. Prior to Humira, my psoriasis was completely under control. I was very hopeful this drug would take away the pain/discomfort/embarrassment of HS. But I think it's only made it worse. :("

1 / 10
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38 Report

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  • Fro...
  • Taken for 1 to 2 years
  • July 22, 2020

"I’ve been on Humira for about 2 years, but the last 6 months, the pharmacy made a mistake and told me my doctor made changes. Instead of weekly, it became bi-weekly. I was punished with flare-ups almost every other week. I couldn’t go into work and called my doctor and had to wait a month for an appointment. He told me he didn’t make those changes and pulled me back to weekly with rifampin and clindamycin. From the experience I’ve learned when it’s weekly, it isn’t so bad, and a flare doesn’t get that big and goes away faster. But once you're off of it, it comes out for revenge. I even got it on the side of my face and never had that before."

6 / 10
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  • Jus...
  • Taken for 2 to 5 years
  • May 18, 2022

"Humira quite literally degraded my quality of life horribly. Seven years since I stopped taking it. It ruined my body. Days where my feet have felt like they're going to shatter from joint pain, my lymphatic system is crap now, I've developed lipedema and lipolymphedema, psoriasis, rapid decline in vision since stopping it. My joints in my hands swell and throb like my grandma's did in her 90s. Headaches, strange skin irritation completely unrelated to anything known. They can't explain it. I'm in my early 40s now, but my body acts as if it's over 80. I was told that 40 years from when taking it, there's an extremely high chance that I will get cancer. The small amount of relief Humira provides is not worth the quality of life that was sacrificed in the promises they claim Humira offers. The headaches, the pain and zapped feeling for 3 to 5 days after each injection was for what? The body of someone in their 80s since they were in their 30s. DON'T BUY INTO THE HUMIRA HYPE! PLEASE!"

1 / 10
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17 Report

More FAQ

  • Liz...
  • Taken for 6 months to 1 year
  • August 22, 2020

"I was prescribed Humira in November 2019 for Hidradenitis Suppurativa. I was told by my Derm that labs were to be done 1x a year. My lab results were great! I was excited to start the drug for my condition. Within a month of taking it, I had massive muscle and joint pain, a rash on my back, blurred vision in the morning, and slight brain fog, but my Derm did not consider it an issue. The Humira was helping my HS stay controlled. I was due for a routine follow-up with my primary doctor, he noticed a change in me and asked how I was. He ordered labs, and my liver had suffered a slight injury. I am now getting IV treatments for that! He also was concerned that my labs were to be 1x a year after treatment and not the normal 6-8 weeks. If it wasn’t for my primary, I would not have gotten a lab until November this year, and it is scary to think what might have happened. I would advise all Humira patients to understand this drug 100% and manage closely just in case their doctor is like mine and is not vigilant."

3 / 10
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20 Report
  • Ang...
  • December 10, 2020

"I have Hidradenitis Suppurativa (HS) stage 2. I finally got approved. I was fine for like 3 months, I got more of my HS. Then I started getting this rash all over my hands and face. I did get a biopsy of this and found out I’m allergic to Humira. All bodies are different, but I’m staying clear away from medicine since they don't work well. I still stick with my routine I’ve always done, and for pain, I use my medical marijuana card."

1 / 10
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19 Report
  • dot...
  • Taken for 1 to 6 months
  • December 1, 2018

"Took Humira for five months. At first, things were promising, but then it seemed to have no effect at all. Now off it for 2 months and have psoriasis, which I never had before - I was taking it for Hidradenitis Suppurativa. A big regret taking this drug."

1 / 10
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23 Report
  • Kat...
  • Taken for 2 to 5 years
  • October 8, 2021

"I've been on Humira for about 4 years. It completely took my HS away, and I was a Hurley stage 2/3 depending on the part of my body and was close to surgery to remove the glands in my armpits when Humira was approved. It had been a lifesaver for me. Recently, it's started becoming less effective. Which is not the drug's fault, as our bodies can get used to medications and stop working as well. I'm hoping that it isn't the case. For the first time in about 3 years, I have 3 abscesses in my groin area: 1 open and draining crater in my upper thigh by my pubic bone, another inflamed one that is coming to a head closer to my inner thigh, and one directly on my groin on my panty line that's not even close to a head and just swollen and inflamed like crazy. All on one side. It's devastating. Sitting hurts. Walking hurts. Moving hurts. Fingers crossed it's just a fluke and it's not coming back regularly."

10 / 10
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  • Rae...
  • Taken for 1 to 6 months
  • November 23, 2019

"I started this medication in September 2019 for severe Hidradenitis Suppurativa (HS), which in a month was clear, but then I got psoriasis all over my body from it. I got pustular psoriasis on my hands and feet, and I got plaque psoriasis all over my torso, legs, back, and scalp. My doctors are so shocked, I’ve never been more depressed in my life. I think I’d rather deal with HS than deal with the constant itching and peeling. My feet have peeled a good 4 layers of skin. My doctor has now started me on phototherapy to my whole body with extra time to hands and feet. I have seen no improvement. Topical steroids (Kenalog), antibiotics - Clindamycin, nothing works. I think it’s best I stop Humira, but my doctors don’t think so."

3 / 10
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20 Report
  • Joe...
  • July 7, 2021

"I have suffered from HS, primarily in the groin area, for three decades, with complications including fistulas. My prescribed treatments have ranged from clindamycin and other antibiotics coupled with prednisone to topical treatments. I started Humira 6 months ago with an initial 80 mg dose followed by 40 mg doses weekly. Humira has almost eliminated my symptoms from HS. Like many, my flare-ups are associated with specific foods and stress. With Humira, I can even enjoy those foods in moderation again."

9 / 10
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13 Report
  • Jab...
  • Taken for 1 to 2 years
  • September 22, 2019

"I was using infliximab, which was working wonders for my HS. Then I switched to Humira, which my doctor said had been PBS approved here in Australia. After six months, I started to decline, noticed more occurrences, more inflammation, no relief. Now I’m off it. Humira made me sick, I had bad sinuses and hot flushes. Now I’m contemplating going back on infliximab, which costs a fortune but works."

1 / 10
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14 Report
  • Hop...
  • Taken for 1 to 6 months
  • March 1, 2018

"I had such great hopes when learning that Humira could possibly help with Hidradenitis Suppurativa (HS). When going through the initial first doses, the HS lesions calmed quite considerably. I really had high hopes. I have been on Humira for 6 months now, and it has lost all effectiveness. I continue the injections (per physician orders) with dread simply due to the intense burning sensation. The stomach area burns much less than the thigh. Allowing the medication to warm to room temperature before injecting also seems to help a bit. From what I understand, the body can produce antibodies to these biologic meds. One day, perhaps a true, long-lasting treatment or cure will be found."

3 / 10
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  • DEB...
  • Taken for 1 to 6 months
  • June 13, 2018

"I read Jen H.'s comment, and she is right, this medicine sucks! I too developed a very bad rash, and after months of different diagnoses and biopsies, they think that the medication caused 'pustular psoriasis,' which I'm not sure they are sure. My whole life is messed up, and I don't know what to do!"

1 / 10
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  • Aan...
  • Taken for 6 months to 1 year
  • June 12, 2019

"I have had Hidradenitis Suppurativa (HS) for close to seven years. I tried Humira for about eight months and discontinued it with doctor approval when we all agreed it wasn't working. It had no effect whatsoever. In fact, the only things that have given me any relief are anti-fungal medications. Specifically, Nystatin oral suspension. I don't know why it works for Hidradenitis Suppurativa, just know that it does."

1 / 10
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16 Report
  • Jin...
  • Taken for 1 to 6 months
  • December 28, 2019

"Was on this in May 2019. Took it for 2 months. No improvement for my Hidradenitis Suppurativa (HS), but I started getting severe joint pain in my knees and left hand. The specialist was very adamant it wasn't Humira. I went off of it and reported it as an adverse event to the company AbbVie. I stopped taking it as I didn't feel right being on it. Trust your gut instinct, if you're not feeling right taking it, then stop. I still have days where my knee joints ache severely, which sucks because I stand all day at work. I wish I never started Humira. I had no issues prior to taking this medication."

1 / 10
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  • Fra...
  • Taken for 6 months to 1 year
  • March 19, 2020

"I've been on this medication, Humira, for a year, and my hidradenitis suppurativa condition seems to be getting worse. My advice: find another alternative, it's not worth all the risk factors for it not to work!"

1 / 10
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  • Tra...
  • Taken for 2 to 5 years
  • May 2, 2020

"In fairness, when I started Humira, I took it for 9 months, was still having flares here and there, so I thought it wasn't working. So together with my dermatologist, I decided to come off it! Bad idea. In those 2 months after, I was hardly fit to move, so I requested to go back on it. I've been on it now again since January 2018, and it's given me my life back. I did develop pustular psoriasis, but with creams, I have that under control. I can live with that to have a normal life again. I still flare the odd time, but it goes in about a day!"

10 / 10
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8 Report
  • FMB...
  • September 13, 2017

"I have been on Humira for 11 months now, and have seen no long-term or overall improvement with my HS. During the first month, where the dosage was very high (4x at week 0, 2x at week 2, week 4 starts the 1x a week dosage prescribed for HS), there was a noticeable improvement, but it quickly went away and my skin kept (and keeps) progressing while on Humira. Injections in the tummy are much less painful than injections in the upper thighs, and leaving the pen out for 30-60 minutes before injecting probably helps (I have never injected without doing this, so I can't say either way). Injection site soreness, at least with me, is fairly minimal and goes away within a few hours. I haven't really noticed any other side effects at all."

1 / 10
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11 Report
  • Jen...
  • September 16, 2015

"It not only gave me sweats, chills, diarrhea, and massive headaches, it also gave me tons of red and purple spots all over my body and a rare form of psoriasis. Yay. This drug sucked."

1 / 10
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45 Report
  • Luc...
  • August 14, 2018

"I've been diagnosed with Hidradenitis Suppurativa (HS) and rheumatoid arthritis (RA). Humira knocks them both out."

9 / 10
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28 Report
  • Anonymous
  • Taken for 2 to 5 years
  • May 4, 2016

"So far, so good. I have been on Humira for over 2 years."

9 / 10
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17 Report
  • MsS...
  • Taken for 2 to 5 years
  • March 15, 2023

"It has worked for me. I read the other reviews, and it makes me scared something bad is going to happen, but so far I have had a good experience."

9 / 10
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4 Report

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Reviews may be edited to correct grammar/spelling or remove inappropriate content. Reviews appearing to come from parties with a vested interest are not published. This information is not intended to endorse any medication and should not replace the expertise and judgment of healthcare professionals.

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