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Acne Fulminans/conglobata Survivor

acne fulminans conglobata scarring

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#1 LFR

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Posted 03 March 2012 - 11:26 PM

Hi all! I first want to thank Dan for creating such a great website and forum. I joined this forum to locate and discuss Acne Fulminans/Conglobata, which I have been a victim of since the age of 17 (now 27). I have had decent remission, yet not totally, since the age of 24 and I'm hoping to learn more about derm surgeries available for this kind of disfiguring scarring.

If anybody out there is willing to share their experience with this horrific disease and its aftermath, please don't be a stranger. It has been a very lonely and depressing existance over the last ten years.

#2 Rheojuice

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Posted 12 March 2012 - 03:25 PM

Hey.

I was diagnosed with this (Acne Conglobata but not fulminans) when I was around 19. Treatment has been quite aggressive for me. I began with (ro)accutane and prednisone, and was on the accutane treatment for about a year. It cleared up my face TREMENDOUSLY well within about 3 to 4 months (give or take). It took longer for the acne on my neck and back to disappear. The chest however is STILL flaming up pretty bad, and during treatment (and even now) I have to get any large nodules injected. I've been off roaccutane since August, and it hasn't reappeared on my face at all (my face is actually clearer than most peoples' :D ). The neck is fine too, with tiny bits of scarring. The chest is MUCH better than it used to be, but it still flares up every 3 weeks or so. The breastbone area however is DESTROYED by scarring :(

I'm only 20 now, and the early intervention with accutane has really gotten rid of the worst of this horrible skin disease. But, as you and I well know, this thing persists for quite a while. I'm a little bit down knowing that I might have this until I'm 30 (maybe even 40 if I'm unlucky). I'm now taking two antibiotics at the moment, and even though I'm only my first week in, the chest is responding pretty well. The only problem I really have now is the chest, with the odd nodule on the back of the neck.

I had to give up swimming because of how self concious I am about the scarring. Since you've been through it longer than I have, do you have any advice? This stuff is pretty damn aggressive, and although it improves it just never seems to go away. If the antibiotic treatments don't do anything, I think I might seriously consider Dapsone.

#3 bls87

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Posted 18 August 2012 - 12:43 PM

Hello, I am 24 and I have been dealing with Acne Conglobata for about 5 years now. I am currently on my fourth month of 80mg/day of Accutane with some, but not much results. I understand what you mean by the scarring, it is very intense, I have dozens all over my back, neck, and raised keloids on my shoulders and on my chest. This disease is extremely frustrating and I hope to have it under control soon. Good luck to you guys!

#4 jet62095

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Posted 25 June 2014 - 03:59 PM

I had extremely severe acne fulminans, the worst my dermatologist and health care complex had ever seen. After 5 months of treatment I was completely in remission. The key was plenty of prednisone and managing the use of accutane as it pertained to the flaring of the fulminans. 3 surgeries to remove the excess skin that fulminans creates followed by about a five day recovery time after each and a lot of pain medication, but it worked!




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