Hidradenitis Supporativa???

[mimi]

Hi, I was wondering if you have ever treated someone with Hidradenitis Supporativa.  It is characterized by cyst or boil-type lesions which appear usually where there are apocrine sweat glands (groin, armpit area) but can also occur where there are eccrine sweat glands (back, neck, legs, arms, almost everywhere).  I have been treated with Accutane, erythromycin, minocin, clindamycin, tetracycline, prednisone, penicillin, etc. etc.  Antibiotic treatments seem to fail, thus leaving the patient with only surgery as an option to drain the lesion. I have seen about 100 dermatologists,(GP'S) doctors, nutritionists, gynecologists, nautopaths...I have no allergies, my organs, thyroid have all been tested as well as my hormones.  The only hormone I tested below average for was the LH hormone, but this is only case sensitive as I have discussed with others who have the condition and they do not have a similar result.  The only times I have had remission was when I had monocleosis and when I exercise 5 times a week for an hour and a half doing mainly aerobic exercise which causes excessive sweating.  I don't seem to sweat at all, even when it's really, really hot...unless I exercise.

Thanks for reading..
Mimi.

[Alan Rockoff, MD]

Mimi:

Although hidradenitis involves sweat glands, it actually has nothing much to do with actual sweating.

As you've discovered, the condition responds poorly to treatments of all kinds.  I've found that injecting cortisone into painful cysts helps at least short-term.  I have read that severe cases respond to surgical removal of the apocrine glands.  While this is a somewhat extensive procedure I have never actually recommended, your case sounds severe enough to make the thought of looking into it possibly worthwhile.

Good luck.

Dr. R

[TONIA]

I also SUFFER with this condition and my doctor is fairly new at dealing with this. I am his case study if you will. I have a severe case where I get the systs or boils in the back of my neck that go so deep they push on my spine and cause severe headachs, on my breasts my sides groin, legs, sides, face, arm pits etc. I don't think there is a place that I haven't had them. They are very painful and frustrating to deal with. I am also one of the many without medical insurance so getting them lanced or drained gets very expensive. I have looked this up on line and have found support groups listed. I just wanted you to know you aren't the only one out there and I understand the pain and frustration you feel because I feel it too. Tonia

[chris]

Hi Mimi, Tonia and Doc R

All I can say is ditto. I have been suffering from Hidradenitus Supporativa for two years but was only recently diagnosed by a skin specialist after many visits to GP's, Surgeons etc.

Countless courses of antibiotics and surgery under my one arm,  which was very bad, has followed. In short anti-biotics have never helped even vaguely and in some cases caused more detereoration.The wounds under my arm from the surgery, 4 months ago, just don't seem to be healing. I had limited success with a homeopath who put me on a candida diet(caused by the years of anti-biotics) and medicines designed to drain the the glands. The swelling subsided and I generally felt better and more energetic during the day.

At this stage I am about to go on a course of Ruacutane (Acutane?)and a short course of an anti-biotic, at great personal expense and I am wondering if it is worth trying or not. As a teenager some 12 years ago I was on a course of ruacutane for acne and had a lot of success with it, but even my Doctor has admitted that it is less successful with this condition.

Tonia I would love to get involved with the support groups you spoke of to share the various treatments people have used, as it seems the medical world can do little for our condition and there must be some more substantial answers out there somewhere. My Email address is ***@****

It is interesting to note that my condition has deteriorated dramatically since I started working long hours in an airconditioned computer room about a year and a half ago. Obviously you never sweat in this environment and as your condition worsens you tend to become less and less active outside the office.

Hope to hear from you soon.

Chris

[Linda]

My 18 year old son also has a severe case of this condition and we have now been advised to pursue the surgery.  I have been unable to find any information on this subject on the internet (other than this one).  Does anyone know a location that provides anything on it.  Also, Doctor, what should we know about this kind of surgery?

[Barbara]

Recently diagnosed with H..S.. and feel pretty fortunate that it is not as severe as some I've heard.  A friend's daughter is constantly in having them drained.  It's rare for mine to not to respond to warm compresses and antibiotics.  It seemed to really take off when I started menopause 5 years ago or so and I've noticed a correlation to outbreaks with stress and hormonal changes (ovulating, etc.)  Anyone else see a hormonal connection??  I recently had a hysterectomy (which had to be postponed once due to a major outbreak of the HS) and am now on another course of antibiotics and some cream.  Have to say it's dramatically better but am not sure it's the antibiotics or the hysterectomy.  Am on hormone replacement patch now and am wondering if fluctuating hormones have been found to play any role?  Doctor??  Would love to think the end is in sight!!

[Wendy ([e-mail])]

Please visit my support club for Hidradenitis on Yahoo at: http://clubs.yahoo.com/clubs/hidradenitis
Also visit HIDE Canada at: http://webhome.globalserve.net/hidecan/

It is difficult to find much information in this disease out there and people go diagnosed for many years.

I hope to see you around and e-mail me if you need more help.

[Heidi Deane]

I find reading your response to the above letter discouraging. I have had surgery done 4 times already and am facing my fifth in alittle over 1 wk.  I have tried everything as well, but to know evail the infections just keep returning.  Usually they are worse than they were the first time.  The only time that I have not been bothered by these "cysts" was when we were vacationing in the state of Florida.  Isn't there anyone anywhere that can offer something, even if experimental, to try to cope with this condition.


With alot of hope,
Heidi

[Alexix]

To all of you that suffer...I have been suffering for 16 years with this disease. And, I have to tell you...there is nothing out there that will help! The doctors are using you as medical miracles and are doing nothing but gaining recognition from you. There is no cure!!!!! There is control, but control and cure are two different things when it comes to your comfort. I have this on my breast...and it has only gotten worse with a biopsy. In that area I have a very large blister that occurs over and over again. The surgery is nothing but a money maker to the surgeons and the draining is nothing more then a medical bill. If you all haven't noticed, you get the infection when stress or depression is high! The only thing you can do is suffer until someone actually gets tired of taking your money and comes up with some help. The skin can be topped with silvedene cream. It will make it smoother and it will prevent the peeling that leaves the area open. The number one reason for this disease is 'stress'.....so, live as calm as you can...and you will find that you have less infections. Because only you will be able to control it...the doctors are damn sure not going to. They make TOO much money off of us!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Terri]

I've been living with this condition for 27 years.  I had the surgery in the groin area, both sides, in 1982.  It seems like the problem just moved up from there.  Now I get them on the front of my pelvis instead of the creases of my legs. Like Tonia, I don't think there's a place on my body that I haven't had one.  I've tried the antibiotic, accutane, antibacterial scrubs, the whole nine yards.  Nothing works to prevent them. There is a cream called Boil Ease that helps a tiny bit.  This eases the pain and helps it come to a head.  The only place I've found it is at Walgreens. It's not much but every little bit helps!  If anyone knows of any research in this area, please let me know!  ***@****

[Elana]

What a blessing it is to FINALLY find others with this agonizing condition!  I have been suffering with for 40 years.  I have had 14 surgeries, under the arms, the groin, and finally a vulvectomy (removal of the labia on the vagina).  I cannot find words to describe the agony, the shame, the embarassment, the hopelessness and despair that I have experienced. You can imagine how this has impacted my life socially, romantically, etc.  What I can say is that there ARE some things that work: I have worked with nutrition, and that is the best possible solution. Fasting helps; and I have learned that eliminating SUGAR in all forms, and reducing FATS to only extra virgin, first cold pressed olive oil has had a very positive result.  Organically grown brown rice (and ALL foods eaten should be organic only, because of the great amounts of toxins via pesticides, antibiotics and hormones used by corporate food growers today) gave me the gift of months and months of pain-free, abcess (abscess)-free living.  STRESS is also a huge factor. Meditation, positive self-talk, and imagery go a long way to helping this condition.  I look forward to meeting you on the discussion forums and support groups.  I need to talk to you.  I need your support.  I do not intend to EVER have another surgery or to go to another doctor for more cutting of my body.  I will never take another antibiotic, for I truly believe that antibiotics are what began, what continued, and what trigger the hell of this endless nightmare.  Purity of food, balance of hormones, and stress-free living in loving friendship are the answers for me.  Bless you all.  Keep your chin up! Anyone with information about this condition and/or sites for discussion and support are welcome to contact me: ***@****  Bye for now.

[Olga]

I can sympathize.  I suffer from Hydradenitis Supperativa as well.  I have had this for 23 years (since I was 16).  I now have it to the point of such pain that I can't lead a normal personal life.  I, too, have gone through different treatments including surgery.  Apparently, my apocrine glands have not been removed because I continue to suffer.

There must be something.

[Jane]

I am 53 years old and have suffered with HS since the age of 13.  Having been seen by hundreds of doctors throughout the years as my condition worsened, I was given every kind of diagnosis imaginable.  

At the age of 40 I was seen by a physician who recommended I go to the Mayo Clinic, as my condition had exascerbated to the point that I could not sit, bend or lie down without pain.

I was seen at the Mayo Clinic by Dr. Carl Podratz, and have undergone two surgeries.  While the surgeries have certainly helped my condition, it has not completely cleared it up.  

I have found since, that if the lesions are drained, and then left open to heal from the inside out, with packing and daily cleaning, they seem to heal with no reoccurence.  New lesions in other areas will erupt but the original lesions are resolved.

This has worked for me, however, I can't say that it will work for everyone.

[Jane]

I am 53 years old and have suffered with HS since the age of 13.  Having been seen by hundreds of doctors throughout the years as my condition worsened, I was given every kind of diagnosis imaginable.  

At the age of 40 I was seen by a physician who recommended I go to the Mayo Clinic, as my condition had exascerbated to the point that I could not sit, bend or lie down without pain.

I was seen at the Mayo Clinic by Dr. Carl Podratz, and have undergone two surgeries.  While the surgeries have certainly helped my condition, it has not completely cleared it up.  

I have found since, that if the lesions are drained, and then left open to heal from the inside out, with packing and daily cleaning, they seem to heal with no reoccurence.  New lesions in other areas will erupt but the original lesions are resolved.

This has worked for me, however, I can't say that it will work for everyone.

[Shelah]

I have been diagnosed with this after years of unsucessful treatment of all kinds.
I can not wear shorts because the backs of my legs at the top are such a mess.Does accutaine help, at least temporarily?

[Judy]

Hello everyone I also have hidradenitus supportiva. I am seeing three different doctors for my boils. At any given time you will at least find 3 boils on me usually more. right now i am suffering with 9 of them and the pain is so bad at times i cant even move. I think the worst part of it is the pain because i have never meet anyone else with this. All of my family thinks this is not very painful but i am here to tell them they are sooooo wrong. I get them in the groin, Inner and outer thighs, under my arms ,back, neck,sides,under my stomach,and yes i have even had them on my face. I am concidering the surgery only because they told me they would remove all the skin where i have had a boil and they said they probally would not come back. I think at this point I would do ANYTHING to get some relif from this PAIN. I sometimes dream that i do not have this disease anymore and life is good, there are times i have them so bad all i do is sit and cry about the pain. But i wont let anyone else see it. How can i get my family to understand the pain that i go through daily?? someone please help me.....

[Rhonda]

Mimi,

I have recently been diagnosed with hidradenitis and have been trying to find out more about it.  The only location that I seem to develop the nodules is under the arms.  Is there any indication that this will spread to other locations of the body and continue to become increasingly more severe?

[stacey]

Mimi,

Your case sounds as severe as mine. Last March, I had surgery on both of my armpits, under my right breast and in the sternum area. The surgery required a month of at-home recovery, but about three to four months overall for the wounds under my arms to heal completely. Most of my hair folicles and sweat glands were removed from the armpits and the wound was left open so that new skin could replace the infected area (sewing the wound would have also been counterproductive...it needed to drain). I had DAILY assistance dressing, showering, bandaging, cleaning, etc. In the areas where the surgeons were most aggressive I have not had any problem since, thank God. If I didn't have help, I would have probably done one site at a time, but it was so worth it. I still have extensive problems in the groin area, but my upper body is truly relieved (minus the one area where the doctors weren't so aggressive). Really, I am so glad the option was there. I know your pain, literally.

[Tropigal]

I suffered from hidradenitis supporativa from puberty until I had the sweat glands removed from both the left and right axilla(underarms). That was six years ago,I am now 33 years old and I haven't had a recurrence. The surgery was no walk in the park, and I have extensive scarring from the front to the back of both armpit areas, however, I feel that it was worth it. I also no longer have to wear antiperspirant/deoderant, nor do I have to shave under my arms because the hair follicles and sweat glands are close in proximity under the arms. Recovery was long, and I lived in Florida where it was unbearably hot at the time. It did take a while for the wounds to close, and I'm not real sure that my surgeon used the best means to close me up. Staples were used, and you can imagine how tender underarm skin is. By the time that the staples were removed, skin had begun growing over them. I still shudder at the thought. Today, other methods may be used to suture the area.
Just wanted to give a different perspective on this topic.

[Philip1815]

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[jobine]

A related discussion, my results was started.

[hmalete]

A related discussion, Hidradenitis Supporativa was started.