...I have had hydradenitis suppurativa for about 7-10 years, and I would like to offer some suggestions that seemed to have worked for me. My history with this horrible disease started when I finished college and seemed to be getting progressively worse. At one point I was getting up to 8 boils on my body at any given time and eruptions came sometimes overnight. Very painful, and I found that all my doctor wanted to do was put me on antibiotics that I was reluctant to take because of my history of bad drug reactions. I even started opening them up (sterile procedure) on my own to release the pus and ease the pain rather than spend 6 hours in the hospital emergency room once a week!
Here is what I know about this disease and what I have done to get them to ease up to the point that I have been in remission for almost 8 months now, with only one bout during the 'hot' months of the summer...
HS is likely hereditary. Chances are if you have it, one or both of your parents had or have it too. It is a disease of the apocrine gland (sweat), whereby it becomes 'plugged' somehow and the result is a localized infection that starts out small, but can grow to be a hard very painful lump or even multiple lumps that fill with pus. These boils can even, if they get bad enough, tunnel into each other, making them long and bigger in area. People can get these boils in their groin, armpits, bra-line, panty/waist line, back, breast area, and even the back of the neck. There is no cure and surgery to remove the scarring and bad areas is not reliable. Some people have had success with a life long course of minocycline antibiotic, others have not.
What I did was change my lifestyle, purify my system, and remove all irritants from my contact.
1)What I do is avoid red meat, never eat pork or deli processed food, in fact ALL processed food should be avoided!! Stick to chicken or fish. Avoid soda, alcohol, and if you smoke, quit. I drink 2-3 litres of
pure spring water each day and eat loads of fruit and veg.
2)Take a good multivitamin. Talk to your doc about recommending one.
3)Make sure you keep your bowels moving! Keeping your intestinal system clean is essential.
4)Stress plays a huge part in this, so what I did was identify what was stressing me out and I found ways to change them. I got out of a stressful job away from horrible people, and took up meditation and regular exercise.
5)Keep your body cool...even at night!!....that means avoid getting overheated. On hot days, especially HUMID days, find a cool place to hang out til it passes.!!
6) last but not least, avoid perfumey soaps and laundry stuff that is not for sensitive skin. I use pump baby soap in the shower and a clean washcloth everyday(and I shower twice a day). I use the mildest, phosphate free, non perfumed soap that I can find. Be gentle.
7) when you do get a breakout, keep it clean, wear a bandage if it is open, and use warm compresses for pain. I made one with epsom salts (can get from drug store OTC) and let it sit for a while. It actually eased the pain and kept the site from growing anymore.
Hope you sufferers out there read this and give it a try...it couldn't hurt...
It just takes a routine and a committment to getting better. I would love to hear if anyone tries any of my suggestions and it they worked...
Sharing information is what us sufferers need to do since there is not much that doctors can offer us right now!!
