This is truly a terrible disease. My 16 y/0 granddaughter (Downs child) has it. I never had heard of it before she got it. Because she has Downs and has had open heart surgery - the risk of infection is enemy number 1!! She has had 1 surgery to remove a huge lump under her left arm pit. It took a long time to heal. I feel so badly for all of you that suffer with this dreadful disease. I see your handle/name is Sacguy and I am assuming you mean Sacramento. I work up here but live in Stockton. I wanted to say to you that my daughter in law has been trying to eliminate things from our girl's diet to see if she could figure out what causes the lumps to form. After several tries, she finally figured out that it was dairy that did it. Since she has figured this out it has been much, much easier to deal with. If they really watch her and refrain from the dairy - the lumps seem to stay away. But one little episode and here they come. I wish you well and much luck with the humira. ~~Tiptonits

Thank you for sharing your story, and your grand daughters story. Thank you for the support as well. I hope that she finds some comfort in this new dairy free life. I wish her the best. Yes, sac is Sacramento. There are amazing doctors that I have been working with at the mercy medical group plastic surgery department. They are very knowledgeable about this disease, and have technology, as in laser treatments that can help. They are very involved group. 9165362400, dr black, and dr. Diana. Just an fyi.

Hi definitely know where you're coming from I have lived it for a long time and I thought it would never end.
I've found near-remission from a lifestyle overhaul that has been ongoing over the last year or so, starting with food. My mother has hereditary pre-diabetes (you wouldn't be able to tell from looking at her she's so thin!) and my father is on heart medication so healthy eating has become a norm in the household when I moved back in with them ie; removing as many processed sugars like white bread, pasta, rice, junk food etc and eating more nutrious foods like vegetables, muesli, eggs and all round smaller portions. Without suffering through life that is (treat yoself sometimes!).
I also fixed my hideously irregular sleeping patterns and I think this made a HUGE difference to letting my body use up nutrients effectively.
I still didn't see great results with HS but I saw some weight loss. Weight loss is not necessarily a cure for HS but it definitely diminishes symptoms hugely and boosts your confidence.
I'm convinced that HS is linked to stress and mental health. I was in a very low point this year which had my HS spreading to my ankles. After going through a stress&anxiety course I found my skin clearing up significantly and if it wasn't for that course I wouldn't have found the outlet to allow myself to try out various skincare options and book for dermatologists. If that makes sense?
So after that course I now have now found an effective skincare regime that keeps my skin far smoother than before and prevents outbreak (I believe anyway).
Hope some of this can help you out. I honestly DID NOT believe I could make this disease come anywhere near stopping but I'm making it work. I sincerely hope others can do the same :)

I was just told I have HS. I'm super bummed but glad to know that I'm not alone...I guess. I am disheartened to hear that this is a life-long problem and not something I can fix with a traditional acne treatment. My doctor recommended humria too Sacguy. I am doing some research now but think I will try it. I'd be interested in connecting with you down the line to see how it works for you.

Thank you all for your replies. It's wierd, but yes you do find comfort in knowing you are not alone in this. I get so hopeful when I hear of someones success with trying something new to control it. I personally have tried a lot of modifications to my diet throughout the years, with little to no success, not to sound negative. From a medical side, humira seems like the first actual medicine that us proven to show an upside to hs. The side effects of the drug has kept me from trying it for over a year now. I went to thailand a little over a month ago, and the humidity seemed to detox my body. In the past trips where I have traveled to, that had humidity, it was a huge flare up condition. When I returned home after a month, I instantly started getting flare ups that are so uncontrollable. Im completely under the spell of this disease and its winning right now. I feel that its time to put my worries aside and try humira out. The thought of going through another surgery frightens me mire than the thought of some of the sude effect from humira. I know its vain, but the idea of having another scar on my bidy, and the down time to heal, and only lay there, and gain weight. I usually gain from twenty to fourty pounds depending on how long bed rest is. Im getting older and losing the weight is getting harder and taking longer to come off. Kateva, im sorry you are at the beginning of this. I know you may have tons of questions and probably frightened. Im definitely here to give you notes on what I have learned throughout the years. When I was finally diagnosed with hs, after being misdiagnosed for many years, there wasn't any research done for hs. You actually became your own doctor, and honestly became more knowledgeable about gs, then your actual doctor, thats if they even knew asnything at all about it. Research has come slow, but far in my opinion. Im extremely thrilled that there is actual research being done now, and there is a drug that shows goid results. Best of luck to everyone. Thanks again for your time, and your comments below. Sometimes all you need is a sounding board to release the frustration. I thank you for listening. Tim

I was just approved for Humira. I’m scared of the side effects as well but i have HS all over my entire body. I need relief

I'm so sorry! I echo your feelings and understand the frustration. I've had many emotional and mental breakdowns. I echo the thoughts of wforwumbo. I've found remission through diet and supplements. I know you said you tried this but I would check out a naturally TNF-a blocking lifestyle before doing Humira (which is a strong TNF-a blocker).

Here are some resources to check into....

You can go to selfhacked.com and look over the information on how to properly level out your immune system. This is how I was able to send my disease into remission. I started taking Serotonin (5-htp). There is especially convincing evidence that the release of TNF-α is inhibited by serotonin and it worked in my case.

Here is a link to block TNF naturally: https://selfhacked.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/

Here is another useful link to figuring out if you are TH1 or TH2 dominant: https://selfhacked.com/blog/supplements-foods-exercise-right-type-th1-vs-th2-dominance/

Hey, I would definitely recommend getting on Humira, especially if you feel frustrated with hs and that it has been bothering you for years.

I've been on humira for one year, and while it does not cure hs, it does seem to help my symptoms more often than not. I still go to the dermatologists and get my problem areas shot up, but I do feel like humira has been worthwhile and it has gotten rid of what led me to get on it in the first place (cysts- inner thighs).

It is the ONLY FDA approved drug for hs.

https://www.dailystrength.org/group/hidradenitis-suppurativa/discussion/no-for-humira

I've been taking Humira for hs for almost 2 years. When I first started taking it, it was like a wonder drug. In 3 months all the lesions stopped draining and they all shrunk back to pea size or smaller. Gradually after the 1st year, the swelling has returned, active draining from time to time occurs and itching is very irritating. No major pain though. Anyway, I'm on the list for surgery now and continue to take Humira because I fear the possibility of a major flair-up. I'd recommend the Humira, the only side effect for me is some swelling in the lower legs and feet.