Hidradenitis Suppurativa

[Graceful One 4]

So this is quite off topic but I need your input as I've researched my brain out...

Have you or anyone you know been diagnosed with this? It is basically inflammation of the apocrine (sweat) glands...it get's pretty nasty and I'm wondering if you have it or know of someone with it what have they done for the best treatment?

Any help is appreciated...

[Alexandra 55]

Jennye, believe it or not I HAD THIS!! I had it when I was just out of college, in 1983. It is HORRIBLE!! I have never experienced such pain. My heart goes out to you (or whoever has it, if it's not you).

My doctor at the time was flummoxed by the inflammation and boils, and prescribed lancing. He sent me to a surgeon to have it done, which was hands down the worst experience of my life. I'm not sure he used any anaesthesia at all, local or otherwise.

Once the lancing was completed, the packed wounds took weeks to heal. Then, wouldn't you know it, the condition returned. For some reason, this time the doctor decided to give me antibiotics, and it worked like a charm!! Why the hell he couldn't have done that the first time, I will never know.

I guess it was a powerful antibiotic--I can't recall the name but think it started with an R--because it kicked the condition and it never returned. For months I was scared it would come back so I carried the drug with me at all times while traveling overseas. But it never did come back.

I forgot to mention: The surgeon at one point recommended surgical removal of all my underarm hair follicles as a preventive measure!! I still have scars from the lancing, can you imagine if I'd agreed to THAT? I hope your docs are more imaginative.

Good luck!!

[Marie3181 5]

My mom gets these things on her underarms, it almost looks like acne, but it's not. They're like really painful red bumps. Her doctor wasn't really sure what they were - I wonder if it could it be the same thing you guys had?

[bbrecruiter2000 1]

Jennye,

This is not off topic. It is a debilatating disease for some and is associated with morbid obesity. It gets worse the more you weigh. Some people get it as they become obese. Some have it at a normal weight, but this is more rare.

I had it for 5 years, but mine has resolved itself, now that I have lost weight. I had them in my arm pits and between my thighs. The problem is worse in skin folds or areas where you sweat more.

I started getting them in the late 90;s and it is excruciating painful to have them lanced or packed. Much worse than lapband surgery, having babies etc, since you are very much awake when they cut them and remove the infection. Sometimes they resolve themselves with antibiotics, but if you wait too long, the infection needs to be removed. So if you get a boil or carbuncle, action should be taken early on with a dose of antibiotics at the first sign of redness or puffiness or any kind of pain.

I had one lanced and packed n 1999 under my arm and it took weeks and weeks for that baby to close up and resolve itself. I dont think that I ever screamed that hard in my life and I was sure that the doc was a brute (female doc).

As a matter of fact, my plastic surgeon was going to fix two noticeable scar areas under my armpit and sew them and use scar therapy to make the area less noticeable. They are embarrasing scars that are very red and prevent me from wearing sleeveless shirts. It looks like a bad acne scar.

The problem is much much better and I no longer have them reappearing since I have lost weight. As a matter of fact, all my skin is better and much healthier. SO for this I am grateful.

Babs in TX

334/214/170

-120

[shellyj 5]

heres a link to a supoort group

http://health.groups.yahoo.com/group/Hidradenitis/?yguid=153103128

hopefully you they will resolve with out surgery!!

[Graceful One 4]

Thanks for the info guys...I have it in my groin area and it hurts really bad...I'm trying to find a derm to treat it as the one I've been going to only has me on antibiotics...so...any other feedback is appreciated!

[Tammydw1 0]

My heart goes out for everyone suffering with this disease. I have had it since 1994 and finally properlly diagnosed with it in 1999. By the time 2003 hit, I was completely disabled from the HS. I always went up and down with my weight but never had a weight issue until this disease really decided to hit. Once it immobilizes you, thats it. Because of this condition, I have needed to collect social security. I just today found out that my Medicare will cover this procedure. I wonder if there is any hidden costs with that one. My biggest fear is, where there is substantial weight loss, there is folds of skin. Any crease or hint of a roll, my HS goes into full lthrottle. I need to lose weight, but I don't think I can endure any more pain from this disease. Has anyone had this procedure with this condition, and how did you overcome that issue?

[Sunshine79 0]

I got my first one in my armpit in 2000 and since then have had it 3 times (once more in the armpit and twice in the groin). The first time, before I knew what it was, it started seeping and oozing and left a 1 inch scar on my armpit (I know it's very gross) but ever since then I just have my dermo prescribe me Bactroban cream when it starts developing and that usually makes it go away. It is a form of acne, just a very painful and sometimes dibilitating form. Hope this helps...