Best of luck to you Dave!!! Keep us updated on your progress! I hope this is your ticket to living a pain free, flare free, drainage free life! We just gotta remember to never lose hope!

Thanks for replying. This disease is so debilitating and painful at times. I'm not giving up hope, but it's hard to keep a positive attitude in this condition. All the best to you.......

That is one scary drug. Do you really have to take it?

http://www.drugs.com/humira.html

Yes. The benefits outweigh the risks in my case. Everybody is different. Nothing else available works anymore and this is my last chance. I took my first induction dose today. So far so good.

I've been on the maximum dosage for about 3 months now. No major change, but my doctor advised me that it could take up to a year. It's hard at first. I spent my first day after the initial injection with flu like symptoms (throwing up, fatigue) But it gets easy, fast. My only major symptom has been fatigue. Best of luck. I hope it works!

Hi Dave.
Sorry to hear about your flare up.
I have been on Humira for 6 months now.
My HS isn't as severe as I've seen some people get. I mainly get it under my armpits and occasionally in my private areas.
However, Since I have been on Humira, I really did notice a big difference! I hardly get flare up's and if I do, they are tolerable and not very painful. Every now and then my armpit will get itchy and I know its coming! But thankfully they go down very quickly. I take 40mg Shots once a week. Only side effects I have noticed so far is Dry Mouth & WEIGHT GAIN. I'm a big girl already, but I have put on 30lbs since Humira! 30LBS!!! So that is the only downfall so far.

Good luck!

My daughter has been on a combo Humira/methotrexate regimen for over two years now. It's been a miracle, truly. No major flare-ups, no drainage anymore...She has experienced exactly 0 side effects and she feels so much better! I hope it works as well for you, and now that it's been approved it should be easier for many people to get with basic insurance. We're on the My Humira program and it only costs us $5 for a three month supply.

I'm increasingly of the opinion that it isn't acceptable for doctors to try to substitute antiinflammatories (Humira) for antibiotics. The typical HS bacteriology (infections) are NOT things that should go untreated.

I'm still furious that they somehow think it's okay to leave Staph and Strep infections untreated for years on end because it's "Hidradenitis". Then if it actually flares until it's life-threatening they decide that's "not Hidradenitis" because "Hidradenitis isn't life-threatening" - I am SO tired of that stupid, dangerous game!!!

I'm still trying to figure out if we're really even candidates for Humira. The manufacturer warns against using Humira if you have a pre-existing infection - well what the hell do they think they're using it on? Boils, abscess, lesions, inflammation etc are all well known signs of infection.

Anyway, Humira isn't the only TNF-a inhibitor out there - some of the more common things for HS like zinc and turmeric are also supposed to have this property, as is caffeine and all sorts of things, and some of them have other beneficial properties in addition to the alleged anti-TNF-a effects.

What's worked almost as well as TNF-a inhibitors for me I think is just staying away from anything that works the opposite. Often these are things that are advertised as "immune boosters" but usually that part of the immune system doesn't need a boost when you already have lots of inflammation.

My challenge to medical professionals remains: Show me anything it takes to start HS and take it all the way to stage 2 except a specialized Staph infection and a Bacteroidale. Show me anything else that is consistent from patient to patient. Show me one biomarker of HS in all the literature that isn't a known sign of infection. I'm sure I could have missed one.

Is it 30 years now that antibiotics have been the weapon of choice for HS? I'm sure it's been that long at least for other members of the "follicular occlusion triad" like pilonidal cyst. Why is that? Because it has nothing to do with infection?

I know I'm grumpy today but really, I really really hate seeing other patients get this same run-around. It chaps my hide and my hide is already chapped!

The antibiotics treat the secondary infections of the lesions, while the TNFa inhibitors such as Humira prevent the immune systems inflammatory response to the plugged FPSU (follicle) (the step before the staph even gets a chance to develop) I'm certain those on Humira will also been through a number of antibiotics courses.

I saw a reference to a study where it has a 18% success rate of bringing about a remission for up to 21 months. could be worth a shot.

Its also interesting for me that potatoes trigger my HS and potatoes are also known to worsen rheumatoid arthritis.. Humira is used to treat both diseases... (im 100% of the opinion HS is dietary related for those who are predisposed and have the condition. i bet diet works better than Humira, if only doctors could prescribe a corrective diet)

I disagree with you regarding diet. At least in my case. Over the last 9 months I've eaten a very strict diet and my HS has been worse than ever. I've quit smoking, lost weight, eliminated milk from my diet and none of these things have improved the HS. Sure, I feel better over all but the flare ups have increased from about every 3 months to every 3 weeks or so. I don't discount the possibility of environmental triggers, hormonal imbalance or other things, but in my case, I can't identify a single food that helps or hurts my condition. I wish it were that simple for me. I do know that stress and fatigue seem to play a factor in my case. If they can figure out what causes the apocrine glands to secrete or not, I think a reliable treatment would follow close behind.

I know medications work differently from person to person. I was given Humira my first year in college and it was the worst things I've ever done. My body reacted terribly to it. I got this very strange rash/dandruff that formed on my head and it used to make my scalp peel and bleed. I lost a lot of hair because of it and fell into a pretty deep depression. It took me a while to realize it was the medication that caused this to happen. So i got off it. Last year my doctor convinced me to give the medication another try. I was very hesitant but I told myself maybe things would go better this time. I was wrong. The same thing happened. I lost a lot of hair, scalp was incredibly itchy and it created this weird layer on my scalp that would peel as if it was a large scab. I immediately got off it once again and told myself I'd never do that again. I hope this medication works for you a lot better than it did for me. It was a nightmare.
- Elizabeth