User Reviews for Humira to treat Hidradenitis Suppurativa
Humira has an average rating of 3.5 out of 10 from a total of 21 ratings for the treatment of Hidradenitis Suppurativa. 24% of reviewers reported a positive effect, while 71% reported a negative effect.
“Hello, I want to share with you all that I had hydradentitis under my both arms for 2 year and I completely cured it with elimination diet. My problem was potatoes from the night shade vegetables. You can search for elimination diet in google and learn how it works. Don't forget about the Nightshades: potatoes, eggplants, peppers, and tomatoes. I am 100% sure that elimination diet will help you get rid of this disease and you will be free from it forever. God bless.”
“Have had Hidradenitis Suppurativa since childhood (before puberty) Stage 2 Hurley And... Colitis, IBD No pain for me when injection in tummy. I feel like superman for 30 min after injection. I feel great. It has reduced lesions every time. The more I build up in my system, the less 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.”
“My wife was put on humira for HS. She was taking 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.”
“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.”
“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 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 pull me back weekly with rifampin & 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.”
“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 stay clear away from medicine since they do t work well... I still with my routine I’ve always done and for pain I use my medical marijuana card”
“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 asking 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. :(”
Frequently asked questions
- Does Humira cause weight gain or weight loss?
- What happens when you stop taking Humira?
- How long does it take for Humira to work?
- How much does Humira cost without insurance?
“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. With in a month of taking it I had massive muscle and joint pain, a rash on my back, blurring 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 ask 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 for my primary I would have not got 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.”
“I started this medication in September 2019 for severe Hidradenitis Suppurative (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 to deal with the constant itching and peeling. My feet and have peeled a good 4 layers of skin. My doctor has now started me on photo therapy 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.”
“Took Humira for five months. At first things were promising but then it seemed to have no effect at all. Now off it 2 months and have psoriasis which I never had before - I was taking it for Hidradenitis Suppurativa. A big regret taking this drug.”
“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.”
“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 80mg dose followed by 40mg doses weekly. Humira has almost eliminated my symptoms from HS. Like many, my flareups are associated with specific foods and stress. With Humira I can even enjoy those foods in moderation again.”
“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 in infliximab which costs a fortune but works .”
“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!!!!!”
“I had such great hopes when learning the 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.”
“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. 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 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.”
“I read Jen H. 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!”
- How long can you stay on Humira?
- How long can Humira be out of the fridge?
- Can you drink alcohol while taking Humira?
- What are the new drugs for the treatment of rheumatoid arthritis (RA)?
“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.”
“In fairness when started humira I took if for 9 months was still having flares here n there so I thought it wasn't working so together with my derm decided to come off it! Bad idea in those 2 months after I was hardly fit to move so requested to go back on it I've been on it now again since Jan 2018 and its gave me my life back. I did develop the pustular psoriasis but with creams have that under control I can live with that to have a normal life again I still flare the odd time but goes in about a day!”
“It not only gave me sweats, chills, diareah 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”
“Ive been diagnosed with Hidradenitis Supprative (HS) and Rheumatoid arthritis (RA). Humira knocks them both out.”
“So far so good. I have been on Humira for over 2 years.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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