It all began in 2001 when I was studying at a large International university in Western Europe. One day I noticed a small pink spot on my pillow, but I did not pay any attention to it at first. The spot started to appear more often even on the wall I rested my head against while studying. I inspected my scalp and found a small bump on the back of my head on the right from my vertex. I thought it might be a scalp pimple or something so I let it be hoping it will disappear by itself. But it did not heal, instead it got slightly bigger and a stinky liquid started to leak from the weakened scalp. I decided to have it checked by a dermatologist after I return home.
In 2002 my dermatologist back home took a sample with a cotton bud and sent it to the department of microbiology for analysis. It came back positive on a fungus infection so she prescribed me tablets of LAMISIL® (terbinafine hydrochloride). At the same time I found out that I have got a beginning fungus infection between the webbing of my toes (middle toe, fourth toe and pinky toe) on both feet. I attributed this for me a disturbing new condition to visiting a public swimming pool in the sports complex of that International University, as the pool they have got there was not very clean. I was taking LAMISIL for about 6 months. It has helped me to get completely rid of the fungus on both my toe webbings and my scalp.
Results from the new cotton-bud sample returned from the lab confirmed that my scalp was fungus-free, which was good news. However, my bump did not shrink a slightest bit. I started thinking that perhaps it is some viral or bacterial infection again from that pool, maybe from some student from an exotic country, who suffered from it and the wet and humid environment of the pool and its facilities helped it to spread and infect other visitors of the sports center.
Based on the recommendation of my dermatologist I had been using several anti-dandruff and antimycotic shampoos like Nizoral® (ketoconazole), Node DS+ (climbazole, salicylic acid), Kertyol P.S.O. (sulphur, salicylic acid, kertyol) and Polytar AF (sulphur). While these shampoos worked very well for the dandruff, they did nothing with my bump.
My dermatologist has prescribed me a combination of cream and lotion of BATRAFEN® (ciclopirox). It is not clear to me why she has chosen another type of antimycoticum when the results from the lab tested negative for mycotic infection. No wonder I have not experienced any results with this treatment either.
My bump was getting bigger, slowly turning the surrounding healthy scalp into infected bumpy tissue with a regular leakage of sometimes smelly yellow or pinkish liquid. My body started forming scabs on the leaking infected scalp. These scabs were itching and even though I tried hard not to touch that area of my scalp, I regularly scratched off several scabs what caused a stronger leakage of that liquid and the scabs formed in those places again.
The hair in the infected area have created strange tight formations of about 10-15 hair that seemed to be growing out of a single pore canal. These hair formations were about 3 milimeters (0.11 inch) from each other and the remaining space in-between was just hairless scalp, which was pink and shiny, resembling a scar tissue. The final effect was exactly the same as when you look at hair of a Barbie doll.
During the Summer of 2004 I started noticing symptoms of a hay fever – itchy eyes, runny nose, trouble breathing, coughing. I went to an immunologist and tested positive on a grass pollen allergy. I received a pollen vaccination and my regimen consisted of TELFAST® (fexofenadine), SERETIDE™ DISKUS™ (fluticasone, salmeterol), NASONEX® (mometasone) and LUIVAC® (lysatum bacteriale mixtum). For the first two years I took this treatment seriously, then it was on and off depending on my condition during the problematic months. I was also taking some probiotic medicine in-between to strengthen my immune system. I completely quit taking any immunosuppressive drugs in late 2010.
It took me about 4 years after I decided to change the dermatologist in 2006. First, I went to my general practitioner, who has prescribed me a lotion of TRIAMCINOLON-IVAX® (triamcinolone) and a couple of custom-made lotions prepared for me by a local pharmacy. The prepared lotions did not do much good, but TRIAMCINOLON has worked like a charm. The swelling was down by 90% in about 3 days. It was a major improvement for me since I started visiting doctors. Too bad that TRIAMCINOLON could not straighten out the remaining 10% of the swollen bumpy area and if I did not apply the lotion for a day or two, the swelling was back fairly quickly.
My general practitioner has sent me to a different dermatologist. It was a young dermatologist who told me she has never seen a condition similar to mine and she does not want to go for trial-and-error journey with me. So she advised me to go to the director of the Department of Dermato-Venereology at the University hospital.
At the doctor’s office of University hospital I took several treatments of CRYOTHERAPY, where they poured liquid nitrogen in a special cup from which the nurse applied the liquid nitrogen on my scalp with a thick cotton bud. This was supposed to stop the inflammation processes in my scalp, but it has only irritated my scalp and new swelling nodules started emerging around that original bump. When I finished this treatment, the infected area of my scalp was already about 8 centimeters (3 inches) in diameter.
The head doctor of the department decided that they have to perform a BIOPSY, so they took a sample of live infected tissue from my scalp and sent it to a histology lab. She said she already knows what the diagnosis is, but she needs to support her opinion with a result from laboratory analysis, otherwise the insurance company will not cover the treatment she is about to put me on.
By instinct I knew that cutting into my infected scalp will only make things worse, so I wanted to get a second opinion on this. By a total coincidence I found a dermatologist who just returned from Japan and started her own practice in a nearby city. When she also advised for biopsy, I finally agreed to undergo this procedure. To my surprise, it went well and the wound healed without any problems.
When the results from histology came in, I finally (after 6 years) heard the diagnosis, which the lab expert, the head doctor of dermatology at the hospital and that new dermatologist independently on each other identified as Perifolliculitis Capitis Abscedens et Suffodiens. The report literally says: “The predominant image is a breakdown of hair follicles, with lymphohistiocytic infiltrate with a giant cellular reaction around the remainings of hair with scarring. The morphological image corresponds to perifolliculitis capitis abscedens et suffodiens”.
I remember I thought to myself, great, now we know what we are up against and the cure will be a piece of cake. Only later I have read on the Internet that this is a disease of unknown etiology and there is no known cure for it yet, but there are a couple of treatments with unsatisfactory results. But the big surprise was still to come – just keep reading.
After learning what my diagnosis is, I decided to go to that new dermatologist. At the University hospital I had to wait for 2 hours every time I went there and when I finally got in the doctor’s office, both the head doctor and the nurse were quite rude to me (they were rude to everybody so I did not take it personally). Plus they have sent me to that cryotherapy, which has significantly worsened my condition.
In 2007, my newest dermatologist performed several blood tests, out of which the most important was the liver hormone test. She has prescribed me the tablets of ROACCUTANE (isotretionin). My daily regimen was 50mg (30mg in the morning and 20mg in the evening) of ROACCUTANE per day for the first 8 weeks. Then I was supposed to lower my dosage to only 40mg per day (20mg in the morning and 20mg in the evening). When you are on ROACCUTANE you need to take a certain cumulative dose based on your weight over a certain period of time for the drug to work.
Then I got a good job abroad and my dermatologist agreed that we will be consulting over the phone and that my parents can pick the prescriptions up for me while I am gone.
My body responded swiftly to the new regimen and within only 2 weeks my bumps were gone, and I mean completely gone. My scalp was nice and flat just like before when I was healthy. Scabs formed in the infected wounded areas of my scalp, but this time I could feel these were healthy scabs without inflammation or itching. The scalp underneath the scabs fully healed, the scabs gradually fell off and for the first time after 6 years I could feel I had a normal healthy scalp. Of course, the hair was still growing in those crazy formations, but my scalp felt good. For me this was a dream come true! At this point, I could not be happier.
The turning point in my treatment was the day I was supposed to lower my dosage, which I did exactly as I was told to by my dermatologist. Already a couple of days later I had bumpy scalp again and also the stinky leaking liquid appeared. Moreover, I got some strange infection, which cause my scalp to produce smelly sticky green goo. I was horrified and returned home immediately.
The infection has turned out to be an aggressive staphylococcal infection and I had to take antibiotic drugs. My dermatologist has also prescribed me a set of two strong custom-made creams. The first one had a strong antibiotic effect and the other contained a high concentration of salicylic acid to help my scalp shed sick cells more rapidly. I applied large amounts of these two creams on my scalp and the infection disappeared in about 2 weeks. The bumps persisted though.
After that I consulted my dermatologist and asked for a second round of ROACCUTANE as this has been the most successful treatment up until then. However, for some unknown reason, she was against it and instead prescribed me a cream of FUCIDIN® (fucidic acid) and a lotion of BELOSALIC® (betamethasone, salicylic acid). To my surprise, this combined treatment has produced very good results – the swelling has significantly decreased and my scalp, which has been irritated and red, turned back into the good old shiny pink scalp. This was in 2008.
I would best describe the following period (from 2009 to 2011) as my dark ages… My condition persisted and whenever I stopped applying the prescribed medicine even for several days, things started getting worse. I was desperate and there has not been any viable solution in sight. Most of the time, I was on that combination of FUCIDIN and BELOSALIC with occasional use of different types and brands of antibiotics (that was whenever I got another staphylococcal infection).
My dermatologist has tried several topical treatments and drugs on me. I got the worst results with a shampoo called CLOBEX® (clobetasol). I used this shampoo for only 3 days. When I applied it on my scalp, it was itching and I got a feeling of burning. I was naively thinking to myself that yes, this must be working. Sadly, after the third day with this shampoo I could feel a bald hairless spot in the infected area of my scalp of about 1cm (0.5 inch) in diameter. I do not need to tell you that I was horrified and depressed like never before.
Since then my condition was only getting worse. Many times I just simply gave up and did not apply anything on my scalp at all. Other time I sought herbal remedies like chamomile tea or fresh leaves of the walnut tree (this has actually worked surprisingly well, but the benefits were short-lived), I even considered taking the Gerson therapy.
In 2011, I went through periods when the inflammation of my scalp was so severe that thick chunks of skin with hair were coming of my scalp. I kept several of these chunks in case some expert will want to inspect them in the future. It felt like I was rotting alive. For some reason I remembered that movie The Fly, the scene where Seth Brundle stands in front of his bathroom mirror. Needless to say, there has not been any hair growth in those areas ever since, just a bald scar tissue, which was growing outwards by infecting the surrounding healthy hair. Sometimes I was so desperate that when my scalp was itching I just poured pure ethanol on it to disinfect it. It was a dumb thing to do, I know.
By the end of 2012 the region of my bald scarred scalp was already about 5 centimeters (2.5 inches) in diameter. I was taking only FUCIDIN to slow down the scarring of my scalp. I applied it as needed, especially when the swelling got worse. Treatment with FUCIDIN alone (applied one time in the evening) turned out to be very efficient (the swelling was reduced considerably every time I applied it) and it took little time to take effect (usually within a day or two).
In January 2013 was the time for my big surprise I was telling you about. While gathering material for this web site, from books and articles on dermatology and hair disorders, about Perifolliculitis Capitis Abscedens et Suffodiens (a.k.a. Dissecting Cellulitis, a.k.a. Hoffman disease), I accidentally found out that for all these years I was misdiagnosed…
My correct diagnosis is a variant of Folliculitis Decalvans called Tufted Folliculitis. Even though this is also a neutrophilic inflammatory primary cicatricial alopecia, the treatment is different from that of Dissecting Cellulitis. I kind of knew something was wrong because whenever I looked at pictures of patients with dissecting cellulitis, the condition of my scalp just looked different.
According to the textbooks on dermatology and articles published in scientific journals of dermatology, the only effective treatment of folliculitis decalvans and tufted folliculitis is a compound called RIFAMPICIN in combination with other antibiotics. I was thrilled, sensing a new hope in finally stopping the disease.
I went to my dermatologist to tell her the good news. To my great astonishment, she just said she thinks this treatment is way off and I should stop searching the Internet… Even though it is not an exact parallel, I somehow recalled the movie The Shawshank Redemption, the scene where Andy Dufresne tells warden Norton about a clear evidence that he is innocent.
She then prescribed me ROACCUTANE again (60mg per day: 30-0-30) in combination with injectables of POLYOXIDONIUM (polyoxidonium). POLYOXIDONIUM is a drug used to treat acute or chronic bacterial or viral infections and allergies, which are accompanied by patient’s secondary immunodeficiencies. My dermatologist told me that the frequency of my POLYOXIDONIUM injections was to be decided by my allergist due to a prescription constraint for dermatologists. After 2 months on this regimen I was supposed to come back for a check-up.
I took 5 shots of POLYOXIDONIUM over a course of 3 weeks, but no major improvement has occurred. I have not started taking ROACCUTANE as I very well remember how badly my ROACCUTANE treatment ended up in 2007. Also my last blood and liver tests showed some unsatisfactory values mainly for cholesterol and some liver hormones. Moreover, if you read through the side effects of ROACCUTANE, I think it would be too much of a gamble just “to try it out again”. Therefore, I decided to take action on my own.