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From Acne to Conglobata



Acne isn't fun. We all know that much anyway. Some of us are just unlucky, and some of us are unluckier than unlucky. Those of us with acne have to keep optimistic about it and keep our moods high as that could be all the difference to overcoming this thing.

My story is no different to most. It began in my teens and I generally wanted it gone. I beat it in the end. But little did I know I would have to enter the fray once more when I entered adulthood.


My Acne History and Background

Acne was always kind of there throughout my teen years. The thing was, when I did get it, it would only stay around very briefly, and I would be back to my clearish skin within a week or two. I always considered myself luckier than most who got acne, as usually it would plague them for weeks and months on end. But when I did get outbreaks it usually only stayed very local to one area. But I can never remember it not being inflammatory or cystic, so when I did break out it would be red and uncomfortable.

I come from a large enough family, with 6 of us kids in total. 4 of us were quite prone to acne (myself included), although at the time I would've considered my acne nowhere near as severe as theirs. My parents had always told me that they never really had it themselves, but I still reckon it was partially heredity. My eldest sister had it for most of her teenage years and earlish adulthood. It wasn't very cystic or inflammatory. My older brother had it quite badly, and was the first of us to go through isotretinoin therapy (roaccutane), and of course it worked tremendously well for him, although now he relapses a bit in his now mid-twenties. My second brother- my twin (non-identical mind you) had it pretty bad. At some point it got so bad and inflamed that he had no choice but to go to a dermatologist and get treated with isotretinoin himself. The results were 10/10. Clearest skin I had ever seen. As for me, my acne never really got bad until I was about 16/17.

I would get very inflamed red acne on my chin and neck, and the odd time on my forehead and nose. The worst of it began to appear on my chest and the back of my neck. I never expected it to get this bad nor did my family. I began taking antibiotics for it but with no luck. I then started using benzoyl peroxide topical cream and it worked well enough. I began to optimise it by following the regimen on this website (acne.org for clarity) and I also started following general advice -more exercise, better diet, more sleep, and avoiding irritation (hard to do with cystic acne). and within about a year my acne began to vanish and I was relatively clear.

At about 18, going on 19 acne began to resurface. It had come back more aggressive than before. I was getting blackheads, comedones, whiteheads, nodules, cystic red acne, and these small dot-like cuts which I later found out to be called abscesses. I was annoyed. I thought I had beaten my acne problem. As usual the acne was appearing mostly on the back of my neck, shoulders, and parts of my face. The worst by far was my chest, particularly the breastbone area. I began the regimen for a second time. Two weeks in I was noticng that it wasn't working. Not only was it not working, it was making it worse (or so I thought at the time). Worried and curious as to why nothing was working, I opted to see a dermatologist, the very same one my twin brother saw. He examined my condition seeing it as a severe acne. I told him I had tried antibiotics with no luck and that benzoyl peroxide was aggravating it. And so began my Roaccutane therapy and we arranged to see every 6 weeks.

The first 6 weeks were... painful to say the least. The drug itself was only exhibiting the usual side effects of dried skin and chapped lips (which were the only side effects it ever really did for the entire therapy) and like usual the acne got worse before it began to get better (the initial rule you could say of isotretinoin). Within those 6 weeks parts of my acne began to get better, and parts of it got worse. My face and shoulders began to improve, but my chest and the back of my neck were doing something weird... Large portions of the skin around these areas were becoming highly inflamed, the skin being raised distintively. I returned to the derm (short for dermatologist from now on), and he was quite surprised himself. As usual he examined my skin and then prescribed me deltacortil medication i.e a corticosteroid used to reduce inflammation of my skin. Curious as to why I was starting to get this strange chronic inflamation, he told me that I was actually suffering from an inflammatory disease as well as severe acne. The medical term for my condition was called "Acne Conglobata" one of the severest forms of acne, which is also rare. I was quite lucky since I was visiting derm just around the time this disease was kicking in and since the first line of treatment is isotretinoin which I had already begun 6 weeks previously. I was surprised by this. In the history of my family no one suspected that I would be the one to have the severest of all our acnes.

As usual, I continued on with my roaccutane and corticosteroid medications while meeting with my derm every 6 weeks. The first 6 weeks I began taking 20mg, which was upped to 40mg after a while, then 50mg, then 60mg, and finally back down to 40mg after finding out that higher than this wasn't necessary to improvement (basically 40mg was giving optimal results). I took the corticosteroid steroid at initially 25 mg which was lowered by 5mg every 6 weeks. This was necessary to prevent any damage to my body. The steroids helped a bit but didn't fully get rid of the inflammation, particularly on the back of my neck. Every 6 weeks when I visited I almost always had to have some of the inflamed nodules and cysts injected with a fast-acting steroid. I never really asked what steroid it was but I suspect it was Triamcinolone. The main reasons it was injected was to reduce the inflamed area quickly, providing me with relief and reducing any scarring that this condition was undoubtedly going to cause in the future. I also had to get a blood test every second visit to see how my liver was doing. It did fine if you were wondering.

On most occasions, isotretinoin treatment usually only lasts about 6 months. But with a condition like mine it is not unusual for it to persist for a long time, even with and during treatment. My roaccutane treatment finished only just a few days ago after nearly 1 year of taking it. The results were actually pretty okay, mixed you could say:

The Face

To begin with my face did extremely well. Within 3 months of starting treatment all acne vanished, even the inflamed skin. The scarring left behind is nearly non-existent. It was even clearer looking than my brothers after his treatment, and this was only after 3 months and it pretty much stayed this way from then on. This made it so much easier when I went out in public as it reduced my anxiety and self-conciousness. I was so happy with this as my face came out clearer looking than it had ever been in the history of life, no exaggeration.

The Shoulders

My shoulders also came out of it quite well, with minimal scarring. Theres not a lot to say about this really. My shoulders never got too bad and they healed relatively quickly. I reckon they may have to be cleared a bit by laser treatment. Happy enough

The Neck

My neck came out of it alright, but I did hope for better results. The sides of my neck were fairly inflamed at the beginning of treatment but this disappeared very quickly. The sides of my neck were pretty much cured as quickly as my face but they came out scarred. The scars stayed there throughout therapy and are still here, although better looking than they once were. Laser is definatly needed I'd say t get rid of the scars. As for the back of my neck, oddly the scarring is minimum and very light at that. I would say this was because it was one of the two areas on my body that was prone to mass inflammation and so was treated more with the injection steroids. Still some laser will probably be needed. As for the front of my neck, it was nearly unaffected at all by acne before, during, and after therapy. Nothing to be done there.

My Back

My back was probably the most widely affected area but not the worst. The acne never spread down past the upperback which was a relief. It also rarely got inflamed, rather it was covered more by your typical average acne. It took about six months for my back to heal and there is still some scarring which isn't that bad. The scars are numerous though and look like tiny white dots, similar to chickenpox scars.

The Chest

This was, by far, the worst area affected. For most if not all treatment the skin became highly inflamed, and the cysts when healed began to reappear almost chronically. The good thing I guess was that it never really spread any lower than the breastbone, but it did travel upward toward the neck although it didn't get very far. The nodules self-ruptured a lot which made it quite painful to wear clothes at time, although this mostly only happened in the first half of treatment. Not to mention it bled a bit most nights as I slept and this ruined a few white shirts. The roughest of it mostly happened within the first 6 months but it did gradually get better over time. I had to get a few inflamed cysts and nodules injected during every visit to the derm. While most of the acne on the other parts of my body got better and better, the acne on my chest was very persistent. It was also hard for me to accept as I was very self-concious about it. This made it difficult for me to enjoy swimming which is something I love to do. In the last 3 months of treatment I was given Dermovate Cream (clobtasol propionate, a topical carticosteroid) to put on the inflamed nodules which helped a good bit. The scarring however was quite severe. While the steroid cream and injections took care of most of the hypertrophic scars, the skin discolouration was something else. The skin is practically the same red colour as acne. No cysts, no pus, no lumps, just red skin. I'm hoping the laser treatment will remove most if not all the red pigmentation.

Rest of my Body

The rest of my body was pretty much unaffected, although if I hadn't gotten treatment as early as I did, I have no doubt that it would have spread to other areas. It is normal for those with Acne Conglobata to get acne as far as the buttocks and down the arms and lower back, which is something I am thankful didn't happen to me.

Where I stand Now

Unfortunately I am not quite there just yet. While I have finished all my medications, I still need to sort out the scarring. Right now, I have to wait two months to see if the acne is going to relapse at all. If everything goes well, I will be moving on to laser treatment and possibly more steroid injections to get rid of the scars. I may discuss other scar treatments with my derm but for I now all I have to do is wait. It does feel good though to be free from acne meds :cool:

Acne Conglobata

This form of acne is quite rare and is unsually severe. It mostly occurs in adults aged between 18 to 30 years but can occur at any age. It is more common for men to get this condition, and although not a lot is known as to how AC comes about, it is linked with testosterone. It often occurs after an active acne problem has disappeared or when acne has been dormant for a while. Much of the above fits my description:

I was 18/19, male, and had overcome a previous acne problem. For anyone else who suffers from AC I want you to remember that during treament you should keep your mood high and determined. If you have any stress problems I would advise that you do something about them as stress doesn't help in the least when dealing with this. And for anyone who thinks they might be suffering from AC, or for anyone who does have a severe form of acne, I would highly recommend seeing a dermatologist. Its not unusual for this thing to persist, so you may experience set backs but, the chances are you're getting better and better so keep that in mind. It could take 6 months to a few years, but it doesn't last forever.


Recommended Comments

Hey mate that sounds very nasty but it appears you handled it as well as is possible with a touch of luck ( had just started accutane, early detection ) . I have some severe on back and shoulders and just wondering, the white scars you mention, are they follicular macular atrophy do you know ( google it )? I have this condition. Did you treat them or know of any way of treating them? Im not sure if there is a cure. Did your derm tell you anything?Thanks and well done beating that terrible disease.RegardsCathal

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somehow similar to my experience, but I took a different route into curing mine. Now my biggest enigma is chest acne. Pretty much same area as yours. Not only that my chest acne last longer than any other area in my body, it also produces darkening marks in the aftermath, and worst of all, hyperthrophic scars(raised scars). So what ends up happening is even when my acne is gone, it still look like my acne was never cured. I also notice that acne on my chest inflames more than any other acne in my body. Now I can't even take my shirt off on public(which I want badly). I don't have any access to advance lasers treatments or whatever, so I have to find a natural way, or some sort of cream to shrink my scars/ make them dissapear. Anyway, I wish you luck man...

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