****UPDATED-CAUSE FOUND! Hidradenitis Suppurativa?

[KittiKatLover]

Hi blackberrybunny,

I too have had this terrible disease for about 20+ years. I haven't had any luck at all. I have seen 2 different dermatologist. They prescribed the same antibiotics as you have mentioned and have given me a benzoil peroxide wash that doesn't seem to help much at all either. I have heard they have a drug out that prevents the apocrine glands from doing it's function, so the lesions can heal, but can't recall the name. I would not advise surgery because I have read that after the pain from the surgery, you will still get flareups in adjacent glands. I am hoping to lose some of those "fat folds" doing the SBD (again, I relapsed, gained the weight back + 20 lbs), so some of my lesions will heal.

I did find some advice on an HS site (http://www.hs-usa.org/forum/). Hope some of the suggestions on that forum help. (This may mention the name of the drug I commented about.)

[saramae1222]

I too have had this disease for a few years. Been to drs and derms but nothing has helped really. Although I dont have much of a flareup now, i have had some doosies in the past. When they get real sore i put A&D ointment on a large bandaid to help with the clothing. It doesnt take all the pain away but it certainly does help. Sometimes i even use a "pad" when they get real bad. Give it a try...thats all we can do with this disease is try.

[<3.Nikki.<3]

I don't have this problem but I do have a skin problem that has been undiagnosed my whole life.. at first they thought it was exzema and then psoriasis, and now they're just like I DON'T KNOW! I get little red bumps randomly all over my body, usually in the morning. They get very itchy and then very splotchy, and then they disappear within an hour of the splotchy stage (Unless I scratch and they bleed, then they scab and scar). This also comes randomly.. not every day but just whenever. The worst is that when I get it on my hands its so bad that my hands swell up and it hurts to bend my fingers, let alone use them for any work. Ice doesn't work, heat doesn't, steroids didn't, anti-histamines don't.. only after I reach that blotchy stage do they finally go away.

Anyway.. I don't have the exact disease this thread is about but I hear you on the skin problems. Though I am certainly grateful that my discomfort is just itchy, not pain, like this problem.

[cyclechic]

Nikki
Just out of curiosity have you seen an allergist? It sounds similar to a food or medicine allergic reaction

Do topical steroids help it at all?

good luck in your search for relief.

[<3.Nikki.<3]

Nikki
Just out of curiosity have you seen an allergist? It sounds similar to a food or medicine allergic reaction

Do topical steroids help it at all?

good luck in your search for relief.

They think it could be a mild gluten allergy.. but even when I cut out anything with gluten it continued to happen. I've cut out nuts, I've tried cutting out dairy, even acidic fruits (I had an allergy to a lot of fruits when I was little).

I am not on medications anymore, not even for Wilson's disease (I do hospital outpatient treatments for that now)...

Topical steroids do not work.

Like I said it's just really weird. My dad thinks it's just a stress-rash or something but the doctor's are puzzled. Luckily there aren't any other symptoms that go along with it so it's not exactly like threatening. Just annoying, heh!

[blackberrybunny]

Thanks for all of the support. My doc put me on a antibiotic called Vibramycin. I took it for a few days and then read up on it and it says it can make my birth control pills ineffective, so I freaked out and quit taking it. I have never wanted kids, and I have always taken great care not to get pregnant. So the anti-s were out!

But now, I've been suffering with a new outbreak. It's right in the middle of my belly, under the roll of fat, near my pubic mound. Because it's in this fold, in the CREASE of it, it is extremelly painful. It's internal (usually these things are on the surface) but this is a baddd one, infected deep inside, and bulging deeply on either side of the crease. Oh, what a bad place! I can't even get outside to play with my dog, or to check the mail, and sitting down on the toilet is excruciating. Sleeping is uncomfortable also. I'm tired today........just sitting here online, not being able to move much.

I'm back on the antibiotics now. Looks like the 'playground' is CLOSED for maintenance!!!!!


And saramae1222, I had a lesion appear on my breast, near the front. Not long ago. The darn thing won't heal, and it has left an ugly scar, like a darker nipple next to my real nipple. Talk about killing a woman's admiration of her newly thinning body! Anyhow, just wanted to say that this particular breast-alien drained so much that first few weeks that I have to cut panty liners in half and tape them on to it. I didn't have anything else! And the thing leaked tooooo much for a simply bandaid. I didn't have any large guaze pads! You gotta do what you've gotta do sometimes!

[nygirl22]

Here's something I found on Dr Weil's website:

To prevent boils from recurring, I would try taking astragalus (Astragalus membranaceous) the root of a plant native to China that can boost the immune system and help prevent infections. Take two capsules or tablets twice a day unless the label directs otherwise. In addition, I suggest trying immune enhancing medicinal mushrooms.

BBB... I would also look into what mokajava pointed out. I'm not sure if you're into this type of thing, but taking something to boost your immune system is at least a try... and I can't help but believe it can only help even if it doesn't get rid of it completely. With being on antibiotics a lot, too, it's important to give your system a boost!

[blackberrybunny]

I have now started a new round of antibiotics, Bactrim, to get rid of the MRSA. Hope this helps me out! I feel like I've been on anti-b's for months now, and so I HOPE this one can kill the MRSA which is apparently causing me all of these problems........

[bella152]

I also found that Kenalog injections helped me quite a bit...

[alysonm]

My sister and I both have been diagnosed with this condition, she has it way worse than I do. Our doctor gave us a roll on medication that we both apply daily to all of our breakout areas. I get them "down there" on my belly and my arm pits. She gets them all those places too, but she has a couple that are always a little flaired up. She also has worse scars than me, I have one on my belly that is pretty bad but hers were awfull. She actually bought the cream Strivectin, and it has made a big difference in her scars. She also went to a plastic surgeon and they said that laser treatment could help the scars, and that laser hair removal might as well because of the way it affects the folicle, unfortunatly she is a natural red head and it wont work on her light hair. I have started waxing all of the areas that are affected and since the hair grown in much thinner, I haven't had any major flair ups. You might also try nair or something like that. Good Luck~

[djgoodys]

Hi, for all those seeking more information and friendship of other HS sufferers like us. There are hundreds of groups on the web. I belong to 3 groups one from MSN, Google, and Yahoo. There great places to stay on top of HS research and other info.

[tsulli]

I am a nurse and we see alot of HS. It can be a very viscious disorder. It has nothing to do with a persons hygine and it affects females more than males. It affects the sweat glands of the arm pits, under breast, and groin area. We all have a grems living on our skin, so when these glands becomes inflamed they do not drain correctly and harbor infection which leads to boli-like lesions. As you know they are extremely painful and when they do drain the odor can be very strong. Currently we do cultures of any drainage and treat with the appropriate antibiotics. And when it is bad we do perform surgery to remove the sweat gland in those areas. Unfortunately at this time it is the only cure for HS.

[drthebean]

Hi. I too have the dreaded HS only it crops up on my bikini line. I have crazy chanels that interlink multiple sites. I have had multiple steroid injections at the site, which just hurt like hell, and live with not feeling comfortable in a bathing suit or intimately because the area is so scarred and ugly when its not flared up. My doc has said the only alternative at this point is surgery. Not just digging the thing out, but going in to chanels and getting rid of those too. He said I will have to have skin grafts. This will only help the main site, and I will still have the problem in the tertiary sites *grrr* I mentioned MRSA at one point and he laughed. I've had it since 1994. The only thing that has helped was accutane, which I had other (worse) reactions to, and the low dose birth control he put me on. I have it all the time but it flares up regularly during the week before and week after my monthly visitor. It is still there but hasn't gotten so out of control that I can not walk lately. I'm switching drs due to insurance and will suggest MRSA again to someone with fresh eyes.
Thanks for posting about yours. I came across your post by accident.

[sickofit81]

Ughhh I am so Scared right now. I was diagnosed with Squamous Cell carcinoma the day after i turned 30. At the time of the surgeon consult i had them look at a boil or cyst in my taint region that i had been dealing with for almost 4 years. I never had insurance when i noticed it so i never had it checked out. Anyways they looked at it and had me do an MRI to rule out Fistula which it wasn't. I have been diagnosed with 4 different things so far and just yesterday they said it was HS. After the first meeting with Colon Rectal and a Dermatologist I soon for some reason broke out with 3 more spot. I immediately popped these but those came back. I have had one spot for 4 years so seeing more i rushed my self into surgery. I feel i did anyways but the doctors at the Mayo supported my choice. I was told they were going to leave these open and not stitch them up and that i would have to pack the wounds for a few weeks to allow them to heal from the inside out. I came out of surgery and they stitched me up which 2 weeks later resulted in the most painful infection and flare up ive ever had. It was in the same spot exactly the same spot. FML I squeezed the hell out of it and cleaned and kept it clean for another 4 days until i called and demanded that i be seen. I drove 1.5 hours and waited 4 hours to be seen. They cut me back open on the spot let it drain and took out the stitches. They packed the wound etc. Its been nearly 6 months since the surgery and this ONE spot has flared up 3 times the pain is so intense i cry. Now the wound wont close all of a sudden since the surgery its only closed up with a thin membrane no thick scar tissue. I have been packing the wound for almost 2 weeks now and i can still fit a q-tip in the hole. Please anyone help me get this thing to vanish. I seriously thinking of cauterizing this hole it wont stop pussing and bleeding so i know if and when it does close its just going to fill up again and ill be bent over in pain in a week or 2 at best.HELP PLEASE! Short of buying what has been recommended on this page "emuaid" which is 53.00 bucks which i don't care i have tried staph infection gel which does help for the pain but the best for that i have found for that is that bikini gel it has lidocaine in it so it numbs it for a few hours or so. I have tried silverdene cream, neosporine, Cortaid. Dr's have put me on tetricycline, and now Doxycycline Hyclate 100mg. I am hoping that this will work but the dermatologist even said it wont resolve the issue permanently. She said i should go back to colon rectal the ones who did the surgery to set up another which they will have to remove it completely. I dont want another surgery. The Mayo messed up my first surgery and this one i need to find a plastic surgeon to fix the batched circumcision from the removal of the cancer. Ughhh please help i am going to jump off a bridge if this gets worse i think the cold water will help with the pain.lol i know that wasn't funny but all jokes aside i am so lost and in pain it sucks but i am glad i am not alone. I know i may not have it as bad as most of you but i could really use some help. I am not over weight but i have gained 20 lbs this past year which is probably due to my poor diet which i am changing or at least trying to. I am going to try and keep this opened as long as possible so it doesn't fill back up since it has been a lot less painful this way.

[kellyarwels]

I am 17. okay I have officially been diagnosed with HS since I was 13. Although, we found out that I have had it since I was younger than 5. HS comes with Polycystic Ovarian Disease. I finally found one Dermatologist who didnt want to put me on countless antibiotics or acne medication. I have been taking Spirolactone, and Asulfidine, which are both hormone pills. I also get steroid shots in my butt every 8 weeks. I have not had a flare up of anykind for 6 months. It is veryy nice. I am fat also so when i exercise and stuff i would usually flare up but not anymore. Go to your dermatologist or gynocologist. If you get diagnosed with PCOD too then i think i am making a breakthrough. I know of 7 other people who have HS and PCOD together. And the hormone pills all work for them. Seriously. It is amazing. Just make sure not to skip a dose. plus, you can still drink alcohol on these meds. The PCOD causes like bad mood swings, irregular periods, acne (since 1st grade for me), oversweating, fast growing hair anywhere, facial hair on girls, a little weight gain can happen. These were all my symptoms. Since taking my meds, everything has stopped. Seriously. Go to your doctor and get tested for PCOD!!