8 replies to this topic

[HadOne]

I'm one of the lucky few *sarcasm* who has acne fulminans; both my face and back are affected. My story:

My condition was isotretinoin (Accutane) induced. Although I had cystic acne throughout high school, my condition was not severe by any measure. When I was 19, I began an Accutane course to improve my acne while in college. I started by taking the full dosage immediately. As an aside, two of my doctors think starting at full dosage was the cause of the problem. I currently have three dermatologists, but I dropped the Dr who initially prescribed Accutane (my annual derma cost is inconceivable to most and health insurance companies won’t even touch me). Since Accutane can help cure acne fulminans in some, I took a full five month course yet my condition worsened incrementally with each month. The effects were debilitating. During the five months I was on Accutane I lost over 40lbs, I’m 6’3� and 180lbs normally but was 140lbs at the end. I had numerous ulcers covering my entire face which were greatly inflamed and, at my worst, was unrecognizable to my own mother due to my disfiguration. Obviously, my condition was conducive to a recluse lifestyle in which I only left my house to attend class. I also had a slight fever, from the condition, throughout the period making it even harder to get out of the house. I would not take any when my condition was at its worst so you’ll have to trust me; I was one ugly mo’fo. Eventually, I decided that I’d have to either kill myself or stop worrying about what others thought of me and trust God would help me, both easier said than done. I obviously chose the latter.

After I stopped taking the Accutane, I began taking HIGH doses (approx. 70mg per day) of prednisone (oral steroid) for a LONG period (six months) to reduce the inflammation. This is enough to make every doctor I tell wince. It was my only choice as Accutane was not only ineffective, it exacerbated the problem. I also began taking the antibiotic Minocycline, later developing hyper-pigmentation disorder from the drug (also VERY rare), which made all of my scars turn deep purple/black. I subsequently switched to Doxycycline for an antibiotic and substituted Dapsone for Prednisone after gradually decreasing the dosage. The steroids helped a little, but I never had dramatic results. I’m now 23 and continue to battle acne fulminans – it has now been just over 4 years since its onset. Currently, my pigmentation disorder is dissipating, and my face continues to improve albeit with considerable scarring and at a snail’s pace. Most of my breakouts can be temporarily cured with cortisone injections; however, this method usually only lasts one month. Some doctors STILL want me to start taking Accutane again. That’s why I have so many; I’ve learned to always get a second, third and fourth opinion because they all have differing ones. Of course I am very averse to Accutane, but I have taken large amounts of Vitamin A (50,000 IU daily) as a substitute for low dose Accutane, and I had a severe negative reaction to it as well. I have done plenty of research, and I believe I am the only person I have found to have such a reaction to multiple cycles of low dose Accutane or vitamin A. Has anyone else had a severely averse reaction to Accutane / vitamin A? Obviously, I’m talking about a chronic problem induced by the drugs.

If you are struggling with acne, trust God and everything will be all right. Keep your head high and look people in the eye. Don’t let your weaknesses define you. I met my absolutely gorgeous wife in college when my condition was improving but truly unenviable. Although I have not been fortunate enough to have found a panacea and I still struggle with the pain that is caused by acne, I have found that the clarity of my skin is not what makes me happy.

To anyone reading this post, BEWARE OF THE SEVERE SIDE EFFECTS OF ACCUTANE! If you do decide to take it, at least start with a LOW dose!

[liliana77]

sorry i didn't even try accutane because my mom is so seriously against me taking it, but thanks for your story especially the bottom note. it was very encouraging. i am really happy to hear from someone that is so positive about the whole ordeal. thanks again! : )P

[Eloise]

Wow! Your words and experience are truly inspiring. "Don't let your weaknesses define you."
Is compensation from your former derm an option? His approach (full dosage) was not medically sound, so can't you sue the bastard? or is it hard to prove that full dosage was the cause of your acne fulminans?

Has anyone else on this board experienced these adverse effects induced by Accutane or heard of it?

[bennyk]

I too had accutane induced acne fulminans. It sucks, especially because when I look at pictures I had barely any acne when I went on accutane. I wish the stupid doctors would have used some judgement and not put me on it. Now I truly am going to have a face full of terrible scars for the rest of my life.

[HadOne]

It’s difficult to prove proximate cause in this case as one cannot necessarily say that but for the doctors’ negligence in prescribing the initial high dosage I would not have had the side effect (direct causation). In addition, the pharmaceutical company that manufacturers the Accutane, Roche, does disclose that Acne Fulminans is an adverse reaction to the drug. As bennyk so well put it, “it [just] sucks.�

I feel you on the old pictures. If I could only go back… My scars are bad, but I get over it.

[bennyk]

It’s difficult to prove proximate cause in this case as one cannot necessarily say that but for the doctors’ negligence in prescribing the initial high dosage I would not have had the side effect (direct causation). In addition, the pharmaceutical company that manufacturers the Accutane, Roche, does disclose that Acne Fulminans is an adverse reaction to the drug. As bennyk so well put it, “it [just] sucks.�

I feel you on the old pictures. If I could only go back… My scars are bad, but I get over it.

I am just within my first month basically since getting acne fulminans, (I was only diagnosed with it 3-4 weeks after I initially showed symptoms, or "got" it), and was wondering if I could ask you some quesitons. You seem to have been through it, and used prednisone for the inflammation and I would really appreciate it if you could answer some questions for me because this is new to me and I would really like some answers. Please pm me your email address, and any messenger address you have if you would be kind enough to answer some questions for me. I would really appreciate it, thanks.

[Git-R-Done]

Just started accuatane yesterday 40mg a day..Well today i woke up and it felt like i pulled a mussel in my back.. havent had any dry skin ....but then again its only the second day..

For the people that are scared to take accutane..I dont blame them..But then i though ive tried evreything and its only been getting worse..I mean id rather have some minor side effects of dry lips/face and what not then have acne..Hell right now id almost do anything to get rid of my acne.

[HadOne]

Git-R-Done, when people think about the severe side-effects of Accutane they are usually not thinking about dry lips (check out my signature). I think what you were trying to say is that, given that you think you have no options other than accutane, you are willing to accept the risk / reward profile of accutane because the probability weighted outcome discounts its adverse reactions. I’m with you.

Have you ever seen anyone with acne fulminans? Google it… The severity of acne fulminans changes the way many people discount accutane’s side-effects (or at least it should).

Note that you are 170 lbs and are taking 40mg per day. That’s not the maximum dosage for your body weight if you want to complete the course in the typical five months. The typical dosage for Accutane is 1 milligram per 2.2 pounds of body weight, divided into 2 doses daily, for 15 to 20 weeks. In the above post I say that the likely reason for the onset of my acne fulminans was immediate full dosage. I was 10 lbs heavier than you, and started taking 80mg on day one. That's two times the amount you’re taking. Lucky for you, your doctor is not an idiot.

I hope it works out better for you than it did for me and others on this board who have experienced the diversity of horrible side-effects of Accutane affords.

[JBHK]

HadOne - I was truly sorry to hear about your experience with Accutane. It's really terrible that it isn't possible to determine who will and will not have an extreme reaction to Accutane before you start to take it. From my own perspective however, I believe that horror stories such as your own put me off taking Accutane for way too long. I am 34 now and wish I had started taking it about 10 years ago. I believe the truth is that reactions such as yours are rare. Not much consolation I know when it happens to you, but rare none the less. Whilst it is important to hear stories such as your own, they need to be read in the context of the many many more people who have taken and benefitted immensely from Accutane and usually with minimal side effects. I wish you the best of luck with your treatment.