Warning long post.
Hey everyone, been awhile since I last posted here. I believe the last time I posted was when I was starting Accutane and the symptoms that came with that. Anyways, the good news is my "acne" is currently in remission of sorts. Bad news is i never caught what I was really dealing with until it was hear the tail end.
A few months back when I started Accutane I was suffering from severe cystic acne. Upon starting Accutane and a bit before I was suffering from extreme fatigue, joint pain, bone pain, headaches and fevers on and off. Initially thinking this was Accutane side effects I took myself off the drug and went to the doctor who diagnosed me with mononucleosis despite the blood test being negative.
Fast forward. My acne had exploded. Massive pustules on my cheeks and holes were being eaten into my shoulders. Covered in hemorrhagic blisters and cysts as well. Obviously worrisome so I schedule an appointment with an Infectious disease doctor (after being prescribed bactrim), she thinks I may have strep and staph, so she cultures the spots. Now im taking 2000mg of antibiotics daily. Clindamycin and doxycycline. Cultures come back negative. No mono no staph. She says it may have been the bactrim messing with the cultures and leaves me on the high dose of anti biotics for staph.
Fast forward a bit again. Things are clearing up on my face, the half dollar size whole in my shoulder is shrinking slowly but other than that my fatigue and other symptoms are still here. Along with my cysts. Keep in mind I've been out of school a LOT due to this mystery condition that keeps being labeled acne.
My Infectious disease doctor sets up an appointment with the best dermatologist in mid MO and bumps me up on the list due to urgency. I go in not expecting much but after talking for awhile and him looking at my labs I have been diagnosed with Acne Fulminans.
Apparently there's only been around 100 cases ever recorded. So no one had thought of it I assume. My immune system was basically on overdrive attacking itself for half a year, damaging my muscles and bones and causing massive craters and scars the size of quarters all over my back and face.
I'm not sure if anyone on this forum has dealt with this auto immune disorder but I found it somewhat interesting despite the fact it ruined a year of my life. Sorry for the rant just though Id put my story out there.
I may be posting some pics of the massive sores soon.
Update with photos, I apologize for the necro
http://m.imgur.com/a/xmJbZ
Bless you for sharing this and well done for not giving up on getting a diagnosis. I hope your treatment works well for you. Topics like this where the diagnosis is rare may well help someone else in the same situation out one day whne they are searching symptoms and trying to find a case where they are similar.
Hi I was diagnosed with acne fulminans in early September and with prednisone, it started going away. All of my ulcers have now closed but I am left with deep scars all over my face neck and body. I am currently on Accutane and doing fine. However its difficult to accept that I dont look like how I used to. My skin is scarred and red. People look at me differently. I just wish to hear from someone who has had acne fulminans for a longer time than me.
55 minutes ago, FittingCrake said:Hi I was diagnosed with acne fulminans in early September and with prednisone, it started going away. All of my ulcers have now closed but I am left with deep scars all over my face neck and body. I am currently on Accutane and doing fine. However its difficult to accept that I dont look like how I used to. My skin is scarred and red. People look at me differently. I just wish to hear from someone who has had acne fulminans for a longer time than me.
Mederma and Bio Oil will make a HUGE difference. Mederma comes in tiny tubes but its worth it. Every day for a few months.