best treatment for Hidradenitis Supporativa

AN ENGLISH PATIENT IS SUING A HOSPITAL FOR ALLEGED ACQUISITION OF MRSA WHILST HAVING ON-GOING EXCISION AND DRAINAGE OF AXILLAE AND LOWER ABDOMINAL/VULVAL GLANDS.  SHE ALSO HAS ARTHRITIS AND IS A HEAVY SMOKER.   I AM A CLINICAL EXPERT WITNESS AND MUST DECIDE IF THERE IS A CASE TO ANSWER OR NOT. I NEED A DESCRIPTION OF WHAT HIDRADENITIS ACTUALLY IS, PLEASE,- AND WHETHER ON-GOING MULTIPLE EXCISIONS ARE THE MOST APPROPRIATE FORM OF TREATMENT
ESPECIALLY AS SHE IS NOW A CARRIER OF MRSA WITH REPEATED FLARE UPS OF INFECTION AND HOSPITAL ADMISSIONS.  THANK YOU. "TISSY"

[Alan Rockoff, MD]

Hidradenitis suppurativa is a chronic inflammation of the apocrine sweat glands.  It affects the armpits, as well as the skin around the breasts and in the groin, producing painful boils.  These leave scars and draining sinuses.

The condition can be quite debilitating, and responds only partially to medical treatments like oral antibiotics or injections of steroids.  In severe cases, surgical excision is considered a useful approach, and may even cure the condition by removing the offending glands.

In other words, surgery per se is not inappropriate, if the severity of the case warrants it.  Whether that is true in your case, or whether acquisition of MRSA reflects negligence, are other aspects you will of course need to consider.

Best.

Dr. Rockoff

[bripik]

Hello my name is brian I have been dealing with this disorder for 8 years.  I have tried every treatment known to any doctor in my are.  And to this day am still suffering. If you want someone opinion that deals with it every second of my life.  The doctors will not excise them anymore.  But I feel that this was the only way I could get relief for more than one day.  The doctors are telling me that repeated excisions would make my chances of making my cysts worse, since they thrive on infection and scar tissue,much more. And also the chance of being put under and not waking up.   Hope this can help.

[sharon29570]

Tissy, I have also suffered from this disease for a very long time. This is a very painful disease. There is no none cure for it. If you need more information it please feel free to contact me and I can send you some through email. Please also have your friend to email me I would love to talk to you also. I'm in some support groups for it and it helps alot to talk to others who have the same problems.
Brian also will you please email me I would love to chat with you also. You don't find alot of people with with HS. I'm available anytime I have done so much research on HS.
Thanks,  ***@****

[sharon29570]

Here is a wed site that may can help. A friend sent it to me. I'm sure you will make the right decision. Plus you can find all kinds of information in the search engines on Hidradenitis Suppurativa. Good luck.

http://www.cdc.gov/ncidod/hip/aresist/mrsafaq.htm

[decorator]

I have been living with hs for sixteen years and have had three surgies to relive the pain I feel when they flair up.I have had a general surgen do the operation,the only problem I have with him is that he only wants to do a little bit at a time.I just saw him today and he did the same thing as usual put me on more antibotics,and as we all know they dont help.I wish doctors would understand that hs is very painfull and all the trouble we go through living with it.I live in the minneapolis mn area and would like to know if anyone has had any secess with a certin doctor or procedier.

[kmcqu]

I have suffered from Hidradenitis for the past 3 years and can say (as anyone living with it knows) that it is absolutely debilitating.  The mental anguish alone is enough to drive you over the edge, not to mention the obvious physical nightmare.  I spent a full 2 years going from one MD to another to a new specialist to someone else only to be given every possible drug and 'speculation' as to what it is and how to deal with it.  For me (I am female) it all started when I changed birth control pills.  Things went absolutely out of control when I went off them completely.  I learned, through my OWN research on sites like this and through NO help of any MD that increased levels of estrogen in women help control Hidradenitis, such as when women who suffer from it are pregnant.  So against my Doctor's wishes (I am a smoker), I went back on the pill (Triphasil 21) and after about 3 months started to see improvement.  I've been back on it for about a year now and can say I finally feel like I've got my life back.  I still get the odd flare-up, especially if I am run down or really stressed out but what a difference!  I have also taken Minocyclin on the very odd occasion which sort of helps and have had steroid injections on specific sores when there is a really bad one.  The injection works really well, the sore goes away within 24 hours but it's not recommended as a regular solution.  For any women suffering from Hidradenitis all I can suggest is try the pill, it's sure helping me.

[decorator]

I read the comment about going on the pill to help with hs, but in my case the pill wont work.I have had a complete hysterectomy and am taking hormone replacement theraphy.I am happy for you that going on the pill has helped you in your every day battle with HS.In my case meds just dont work anymore.I have what my dr calls a very severe and recuring HS .We are now talking about taking a good part of tissue and mussle in surgury and then doing a skin graft over the area that is operated on.The new skin would come from a part of my body that I dont have a problem with,we will see how it goes.

[Rose76]

I have suffered with H.S., what seems like an everyday curse, for 11 years now. As I write I have 7 that I am dealing with. When I know one is going to "pop" I get a very sick feeling in my stomach, and I feel very weak. I have tried everything, from relaxation techniches, minocycline, naproxens which helps with my pain and inflamation (inflammation) and sweeling. A friend suggested I use collidal silver which kills the bacteria in the blood. I have also come to pray to God to release me from this hell. I can sympathize with everyone who has to deal with this horrible disease, and it seems cruel to realize that there is no known cure, only treatment. How can any one of us hold a normal job? I was a cashier/stocker and I can't explain the amount of pain lifting and lifting. Stress triggers onsets, that much we all know, but having "them" everyday of your life is stress in itself, is it not? Living in pure white cotton, shirts and shorts is what my dermatologist"s" have told me. I am glad that I am not alone in this struggle. Just because I smoke doesn't mean that I have to have a sore the size of an orange underneath my armpits, and everywhere else. I'm sick of it. I'm tired of the useless medications, and false hopes, someone needs to get on this, and fast!

[cjo]

Hi, im 39 and just started getting these knots under my arm, so I went to the doctor and he told me that my sweat glands were clogged up and put me on an antibiotic, but they never drain so they just stay there and are very painful, so I found this site and I am thinking that maybe this is what I've got. I would like to hear from anybody about this. I don't have any in my groin area and hope I don't get any. Does anybody have a drainage from their belly button and is this associated with the hs. Thanks for listening, CJO

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[Lessxxextreme]

Hi, I'm sixteen years old and I suffer with H.S. I've suffered with it since I've gotten acne and my period. It started between my legs on both sides of my thighs that now come and go whenever they please and leave nasty scars. After being treated with Accutane, about over a year ago, I started to get them on my breasts and underneith
my arms. I've been to doctors, I've had them popped, needles have been poked at them, and they have been tested. Unfortunately, I go through this pain all the time now because they won't go away. The doctor has told me that some are infected with MRSA. And i was scheduled to meet with a plastic surgent to have all the spots and even scars removed to try to relieve my pain. I'm still waiting on a date to have my surgery done. At the moment, I'm suffering from one boil that's about the size of a baby's fist. It's more painful then anyone of them I've had and I've tooken every medication possible. I know what it's like to have this curse, it's not only painful- but embarrassing./:

[tantitia]

A related discussion, Help for hydradenitis? was started.