HS & Humira??? Help!!!

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Hey, I’ve dealing with HS since 2009 but I didn’t get diagnosed until 2011. Since then I have had several surgeries since 2011. The HS have become some what at a standstill to say the least. It comes every 2 to 3 months now. When at one point I was having surgery for every two weeks at one point. I just started seeing a dermatologist for about a little over a year. He has been trying for a while now to put me on the Humira shot. I’m not to excited about that but don’t want to continue having surgeries either. Is anybody on the shot or know information about it? Anything will be helpful 

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  • Posted

    I've had it since 2009 and like you I've had plenty of surgeries ( over 13 of them) and the hard part of it is that just when u think your getting better this disease find tracts in certain regions and comes back. Started the surgery Saga in Buttocks region, and then both armpits, following another set of buttocks, and proceeded to both innerthigh areas, and the n last year the Groin region And once again back to buttocks. Brutal to say the least with all the scarring and stuff. So u ask your self when will enough surgeries be enough. Well I've had the best Plastic surgeon for Years and with all the grafts I've had And wound vaca I've gone thru I've noticed that the armpits I had done in 2010 (right) and the left one 2013, I have never got recurrence their but buttocks always reaccurrenc. So finally I have relocated from NYC and ha 've moved down to Florida and am seeing a great Dermatologist who has introduced me to Humira I've been taken the shots now for at least three months and noticing significant improvements. Definitely worth as shot to tr y and control it. I'm noticing receding ares of inflammation all over the place with existiing nodules. Malodor still an issue but twice a week bleach baths will help. Merry Christmas and God Speed.

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    • Posted

      Thanks for the advice! It was much needed! I think I’m going to try the shot and see how it goes. I’m tired of the back and forth and just want to see a change. Happy Holidays to you and yours. Thanks again. 
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  • Posted

    I have had hs for over 30 years, was actually given a name 5 years ago. I was so happy when they finally habe my condition a name! But soon realized there was nothing to get excited about because Drs still have no answers to cure it 😢 I was tired of being told i was dirty, too fat, eat wrong, wear the wrong underwear, pants..etc etc... All this was told to me as a preteen. Needles to say, my self esteem was horrible! I have changed diet, clothing material, soaps, laundry soap, last huge amounts of weight, turned anorexic, chemical burns... Been through a lot! I have had as many as 30 abscesses at once, as large as a grapefruit Just started Humira 2 weeks ago, second dose of 2 shots tomorrow. Dr said most don't see any for 3 months... I am so excited for next dose, as I have seen an improvement within 4 days! If you have the resources to try it, please give it a try! I have never felt this "normal" and it's not even all cleared up yet...fingers crossed! Good luck!

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    • Posted

      Praying that the shot continues to work for you and thanks for sharing your story and for the advice on the shot. I’m hoping and praying to have the same outcome as you! Thanks again
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  • Posted

    Dealing with HS over 25 years. Over 8 surgeries. Very severe flare ups in groin, left inner thigh and buttucks. Tried every antibiotic. None helped. Did Humira injections over a year Humira was only affective with the first dosage which was 4 shots. Once i started the once per week injection it was ineffective! 4 months ago i was referred to a HS Specialist. I started on a Advosil Rifodin ointment compound. Althought the rifodin antibiotic leaves red stains, its worth the aggravation. I wear women sanitary panties and gauze to wick away the fluid that drains from the affected areas. After 3 months my pores haved opened more and draining has increased. Some areas have shrunken significantly which is the objective. The boils on my buttocks and nodels in my inner thigh have completely drained and flat. Once flare ups and groin draining have cleared and shrunken, plastic reconstructive surgery will be performed. Only downside the compound is not covered by insurance. I spend 140.00 per month out of pocket. Humira ins co payment is much more. The manufacturer of Humira provided me with a year supply for free otherwise i couldnt afford it. Hope this helps! Research and find a HS Specialist. Dermatologist don't really have an effective way to treat this chronic skin disease!

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  • Posted

    I have been researching information on hydrodenitus supprativa for my husband who had a chronic condition with huge boils under his armpit and buttocks for almost 20 years...it more recently was in his armpits though and he would have huge boils twice a month he would have to get drained. I had him try everything I found online from diet, soap changes etc....nothing worked. It got so bad that a doctor was going to skin graph his armpits. I found online something about humira possibly working on HS and convinced the doctor to let him try it. He was on the drug for 6 months and then stopped the humira. He has not had 1 boil since then. ...I hate to say hes cured but it's been really promising.....thought I would pass this along since I may be able to help others with this skin condition.

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