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Skin Care and Diseases

Hidradenitis suppurativa

02/18/2006

Question:

Hi, I`m 27 year old female and I have been suffering from HS for over 10 years. Eight members of my family are affected by this disease. I have seen 7 different dermatologists and my condition has not improved. I`ve taken courses of tetracycline, doxycycline and I`m currently on minocycline. I`m also using hibiclens and a topical cream (the name escapes me right now), and I`m taking tagamet and a diuretic in an attempt to regulate my hormones. I have read about 2 current studies (one in Philadelphia and one in NY) involving the use of anti-inflammatory medications that are used to treat psoriasis and rheumatoid arthritis, but in seems that in general very little research is being done to find a cure for this debilitating disease. I saw two doctors at the Cleveland Clinic who said there is no way I could be treated with those medications because they cost upwards of $80,000/year, none of which would be covered by insurance because these drugs are considered experimental. So, my only options now are accutane and surgical procedures and skin grafts. I will reluctantly be starting a course of accutane next week. Help! Are there any dermatologists in the Ohio area that are studying or plan to study this disease? The sufferers of this condition are frustrated and need help. Just search the net for HS and you will find many stories those facing chronic pain, shame, embarrassment and undergoing numerous unsuccessful treatments from a community of doctors that are doing little to improve our options. What can we do to bring this issue to the forefront of dermatologic research? I realize you may not be able to help, but I am trying to explore every avenue possible.

Answer:

Your disease is no doubt tormenting.  As you know it is often associated with acne with abscesses on not only the face, chest and back but also on the scalp, axilla, breasts, groin and around the anus.  The draining abscesses sap your strength, are malodorous, and very difficult for you to tolerate.  Off-label uses of some of the new biologics which are used for rheumatoid arthritis, psoriasis, psoriatric arthritis and more recently for other inflammatory diseases such as pyoderma gangrenosma and inflammatory bowel disease might be helpful.  Some of these usages are "off label", meaning that they have not been directly approved by the FDA for such usage.  Treatment with drugs such as Imiqumod appear to be very helpful in controlling the severe inflammation.  Accutane has been helpful but not curative in most of the cases that I have treated.  Surgical removal is not only painful and frustrating but does leave significant scarring...but it has been the most successful in ridding patients of this process.

There are several institutions in the United States that I would check with.  I would look at the National Institutes of Health website and see if they have any ongoing studies regarding hydradenitis.  I would also check the websites of institutions like the University of Pennsylvania School of Medicine where there has been a longstanding research group studying acne and acne-like processes.  You might also check the website of the American Academy of Dermatology (aad.org).  There are a number of helpful locations listed on that website which might lead you to some of the research material that you require.

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Response by:

Charles L Heaton, MD
Professor
College of Medicine
University of Cincinnati