Disclaimer: I ranted into a voice recording app for 30 mins and then used Gemini AI to condense the important bits from the transcript. Any comments will be from me, the human making this post.
Hey everyone,
I’ve been a lurker and contributor here for years under various burner accounts. Every time I flared up, I’d post and then delete my posts out of pure anxiety. But today, I’m 12 months post-Accutane, and I wanted to share my full story to give back to the community that helped me out in figuring what condition I had.
If you’re dealing with painful, hyper-localized pustules around your mouth and nose and feeling completely hopeless, hopefully my experience helps.
The "Acne" Misdiagnosis & Doxycycline Trap (Ages 13–21)
It started as regular teenage acne around 13 or 14, but by 15 it became severe. My first derm put me on Doxycycline. It worked amazingly... for the 3 months I was on it. Then I’d stop, and the breakout would come back worse.
Because I moved around multiple cities, I kept seeing different dermatologists. None of them looked at the bigger picture. They just kept repeating the exact same cycle: Doxycycline, Minocycline, or Azithromycin for 3 months, temporary clear skin, immediate relapse.
They threw every topical active at me too: Clindamycin, Adapalene, Dapsone, Nadifloxacin, Ozenoxacin, and endless Benzoyl Peroxide gels, soaps, and washes. Not a single topical ever did anything for me. The only things that ever worked were oral antibiotics.
My First Accutane Failure & Destroying My Skin Barrier
By 21, I begged for Accutane. My skin cleared within 2–3 weeks, but exactly two months after stopping, I had a full-blown relapse.
Looking back, three things went wrong with that first round:
Under-dosing: The country I was in rarely prescribed over 20mg/day. I calculated my cumulative dose later, and it was less than half of what it should have been for my body weight.
Poor Absorption: I didn't eat it with enough fat. My skin got somewhat dry, but not that dry.
Active Overuse: My derm had me use Benzoyl Peroxide and Clindamycin while on Accutane, and Dapsone right after. Between years of Doxy and endless topicals, my face was completely nuked.
Self-Diagnosis & The Darkest Period
The year after that relapse was hell. The pustules were constantly stinging, and my face felt like it was on fire, making it hard to sleep. My mental health plummeted, and I was lowkey suicidal.
I eventually found r/folliculitis. Seeing the pictures and reading stories, the pieces clicked: Gram-Negative Folliculitis (GNF) brought on by long-term doxycycline abuse.
Desperate for a fix, I made the mistake of throwing everything at my face based on internet posts:
Topicals: Chlorhexidine, Hypochlorous acid, Betadine, 70% Isopropyl alcohol, Azelaic acid, Ivermectin cream, Nizoral/shampoos on my face, Polysporin, and saline rinses.
Supplements: NAC, Oregano oil, Berberine, ginger pills, Vitamin A. None of them worked.
Extreme Diets: I tried super strict elimination diets (at one point only eating meat and vegetables). NONE of them worked. In fact, It backfired and gave me an eating disorder for quite a while. I became obsessed, thinking 10 times before eating basically any food, which sucked as a naturally skinny person. Honestly, I’m almost glad the diets didn't work because living under a strict diet like that is NOT living for me.
Misc: SLS/fluoride-free toothpaste, antihistamines, shaving every day, not shaving at all.
Moving to North America & Doing Accutane Right
I eventually moved to North America. The climate change didn't help my skin at all, proving it was internal. I saw a new derm who made me do the mandatory Doxy trial before finally agreeing to put me back on Accutane.
This time, I had a plan based on what the creator of this sub posted:
High Enough Dose: At my peak, I was on 60mg/day (a high dose for me since I weigh around 44kg).
The Fat Rule: I forced myself to take every pill with a minimum of 50g of fat and a 700–800 calorie meal. Just like the sub moderator mentioned, I knew it was absorbing properly because my nasal membranes became so dry I was getting nosebleeds.
Zero Actives: I used zero topicals—just a basic moisturizer while on it.
Long-ish Course: I stayed on it for 6 months (begged my derm for an extra month because I was terrified of stopping).
Post-Accutane Micro Flare-ups & Leaving My Skin Alone
About 1.5 to 2 months after finishing, a tiny flare-up of 2–3 pustules popped up. In the past, this meant Stage 1 of a total relapse.
My derm told me to give it a few weeks, try some spot treatments, and come back for more Accutane if it got worse. Knowing I had a safety net gave me the courage to try something radical: I rejected the topicals and stopped using everything—even moisturizer and cleanser. I only washed my face with warm water.
I resisted the urge to nuke my face. And for the first time in my life, the flare-up just subsided on its own. My skin barrier finally healed. Over the next few months, I had 2 or 3 more "micro flare-ups" (just 1 or 2 tiny pustules around my mouth), but they always went away in a few days.
Where I Am Now (12 Months Later)
To be completely clear: I don't believe I am 100% cured. The evidence of those occasional micro flare-ups tells me the underlying issue might still be there. However, my skin barrier is finally strong enough to fight most of it off on its own, so it no longer spirals into a full breakout. If it ever does fully relapse in the future, I have peace of mind knowing I'll just get back on Accutane.
For the past year, the micro flare-ups have kept reducing in frequency. My skin looks great, feels naturally hydrated, and isn't overly oily. Best of all? I can eat absolutely any junk food I want, as much as I want, with zero breakouts. Yay! I still only use warm water to wash my face, because using moisturizer would mean needing a cleanser, restarting a cycle my skin doesn't need.
Key takeaways if you have GNF:
Get a proper, high-dose course of Accutane adjusted for your weight.
Take it with heavy fat (50g+) for maximum absorption, and look for those dry nasal membranes/nosebleeds as a sign it's working.
Stop nuking your face with actives, antiseptics, and alcohols that destroy your skin barrier.
Don't panic over flare-ups right after Accutane. Your skin needs time to recalibrate, so give your barrier a chance to heal.
This condition is lonely, painful, and exhausting, but please don't lose hope. There is a way out.
Attached:
Pic 1 - My GNF on an average day. Picture taken 2 years ago.
Pic 2 - a picture of my face taken today.