Current Treatment for Acne Inversa

[tomton1000]

I was recently diagnosed by my Dermatologist as having Acne Inversa.  I have had continuing problems with acne and cysts on my buttocks area for approximately 15 years.  I have seen multiple physicians regarding the condition, however, all have either treated me only with antibiotics or considered it an allergic reaction of some sort, regardless, none of the treatments have worked.  Recently I went to a new dermatologist who diagnosed me with Acne Inversa, however, he stated it was curable and prescribed me Accutane.  Upon further reading about Acne Inversa, I found out that not only was Acne Inversa incurable, but also very difficult to treat.  Recently the disease has seemingly spread past my buttocks area onto the back of my thighs and my waistband area.  

1) What is the current and most effective treatment for Acne Inversa?  (Most of my reading online was from relatively dated material)  I have been taking Accutane for approximately one month and have so far not seen any favorable results.  I have also read that Accutane does little for Acne Inversa.  Is there truth to this?

2) I have read that Carbon Dioxide Laser Ablation may be just as effective as skin grafts, however, it was an emerging treatment.  As the material I was reading was dated, has their been improvements or increase success in the use of Carbon Dioxide Laser Ablation in regards to Acne Inversa?

3) How much will the disease spread over my body?  I have read that it is not contagious, however, does this apply to only other people, or is it not contagious within your own body, ie. selected areas of my body have been predisposed for the disease to occur in?

4) If I opt for skin grafts, can these be done over a large portion of my body?  ie. buttocks? Is the option of skin grafting a reasonable response to the problem of Acne Inversa?  As I have read that surgery should be performed earlier rather than later, is this a subject I should seriously consider now, before it gets worse?

[Alan Rockoff, MD]

Acne inversa is another name for hidradenitis suppurativa. but that condition primarily affects the armpits and sometimes the groin, not the buttocks.  So it's hard for me to answer your questions without knowing for sure what you have.  Have any cultures for bacteria been done?  Biopsies?  It is true that Accutane doesn't work very well for cystic diseases that aren't true acne, but nothing else does either, so a course of this drug seems reasonable.  I have little experience in seeing the results of surgery, laser or otherwise, on this kind of condition, but what I've seen has not made me enthusiastic.  Other comments: 1) I don't know why anyone would call this an allergic reaction.  2) I don't know whether cultures have been done, but I would presume this to be non-contagious.  If no one has caught it from you in 15 years (or if it hasn't spread to other parts of your body in that time), there's no reason to think it will be now.  I advise you to finish the course of Accutane, to see whether it works fully or in part.  If that fails, I advise you to arrange to be seen in an academic medical center, where an interdisciplinary team of medical and surgical dermatologists can evaluate you and help you decide what, if anything, should be done.

Best.

Dr. Rockoff

[tomton1000]

Doctor,

No cultures were taken at my current Dermatologist (he swabbed the area, but I do not know if he sent the swabs for culture, nor has he mentioned any "results").  I also have not received any biopsies for the condition.  I am extremely confused by this and aggravated.  At some point in my life I would really like to go out on a date again.

In addition, I am extremely displeased with my Dermatologist for suggesting that this is a curable condition, and not providing me with the necessary information regarding it, prior to my own research online.  Thank you for your advice doctor.