Hi, Hiddy Cheeks and Cali04! Oh my gosh, I've never joined a forum before and I'm so glad to "talk" to people who understand this hell, I am sitting here crying. (My poor husband must think I'm insane.)
NO, I cant FRIGGING BELIEVE I am still suffering from cystic acne in my 40s. I mean, if you told me I was going to still be fighting this curse 20+ years later, I might have killed myself. Instead of thinking I'll grow out of it when I'm 40, now i cant wait for menopause, hoping THAT will help, as clearly for me, it is related to my hormones! Granted, for many years its truly been manageable. But I have had several bouts over the years that were SO BAD my entire face was disfigured -- I would have people stop me on the street and say, "What happened to your face?"
When I was in my late 20s, over the course of a week, my whole face swelled up and I had a chronic fever from the infection. This went on for weeks/months. I had to be on steroids before they would dare start me on Accutane because they were afraid it would get WORSE before it got better. Some of my doctors were afraid to treat me; I went to see an Accutane specialist several states away who said, "I've seen worse", which made me feel better. Anyway, now when I have a flare up that's particularly bad, I panic thinking its going to accelerate....
Anyway, I'm sorry to babble.
Hiddy Cheeks - Regarding scarring, fortunately my skin is AMAZINGLY resilient. Sure, I have scarring - lower cheeks, forehead -- but its' NOTHING to complain about. Also, fortunately, as a woman, I can wear makeup and I have some great stuff, cover-ups and powders, so you'd never know I've had cystic acne for years. So, I am sorry to hear about your scarring - that would make it 100x worse than it already is.
Recently, I tried laser treatments to lessen the scars - Fraxel. Have you heard of it? I tried other things that didn't help at all. With Fraxel, they do a more "shallow" treatment first which was fantastic for removing the hyper-pigmentation (I also have melasma) but that did not last. The second treatment was deep/more intense and the subsequent swelling of my face (for about a week) scared the CRAP out of me. Yes, it DID lessen some of the pitting, so I recommend you look it for scarring! But I was too afraid to do a third treatment. Also, it's expensive, so shop around. I found that a medical spa was $1000 cheaper than my dermatologist for a package of several treatments.
I am glad to hear that you are doing Accutane again. Good for you! I should make a promise to myself that if I am not under control with some of these other things, I will try Accutane again.
Cali04 - I have not tried spironolactone. Or if I have, it was when I was in high school or college. Has it been around that long? It sounds familiar. Are you noticing any relief with it? I have been reading what other people have recommended and made a list of things to try/ask my dermo about. Someone also mentioned Oracea which is just a stronger doxycycline? And using an intensive alpha hydrox? Has anyone had luck with Retin A? I haven't.
Again, I'm so sorry to babble. I cant help myself. THANK YOU THANK YOU THANK YOU for being on this forum. Best of luck and please keep me posted on your successes.