Please click on the below link. there is very little information on this disease but this is the best place to start.
It started off years ago i am not too sure what age but I was very young i am thinking 14, 15 years old. i thought they were just pimples or acne on my scalp. i was a very active teenager spent most of my days outside of the house in the sun from 7 am till 11 pm biking, hiking, at a friends house etc and thought it was becuase i was sweating so i started to shower two times a day once in the morning and once at night. it didnt help at all. It became less prominent over the years as the yellow, crusty type of pimples dissapeared and hurt less and less. there were a lot of them at the very top of my head which i was loosing a lot of hair from and hair was thinning. My mom said it was because of the Gel i was using so i stopped, nothing happened. i got a cold one day and my doctor prescribed me amoxocillin and after just two days acne everywhere dissapeared but came back three weeks later. I went to a Derm and he preformed a biopsy and recieved a stitch and after two weeks said its Folliculitis. he prescribed me Doxycycline probably one of the most ineffective medicines ive ever taken as it did nothing. i went to another derm who took a culture and called me back three weeks later. It had gotten so bad in that time that i had to get another set of amoxicillin to calm it down. He told me there is a presence of stpah and the drug that kills it the most effectively is Cephalexin. I took that for 20 days or so and every night it would make me afraid of the towel that was hanging on my door as i thought it was a ghost and it would start dancing and flying around. one of the few side affects of that drug is fear so no wonder.
after i was done its been about 3 months and i have one or two that pop up here or there and i control them by using neutrogena anti bacterial shampoo once a week or twice a week depending on the frequency they come. i have also controlled my diet a little, less sugary stuff and and more vitamins and a few fruits and milk (2%) and it helps tremendously. I hope all of you find refuge from such a horrible thing and pray to the one you believe in to not give you this. on a list of things to live with everyday id rather have swine flu.
@mgugs2424, i have been suffering from this chronic desease for the past five years and fully understand what you're going through. I was recently diagnosed with Foll. Decalvans due to seeing a lot of "incompetent" dermatologists and am so grateful that i found on that actualy cares about my condition and not the revenue it brings in. I don't wanna bore you with complaints it's just that it feels so good to finally be able to share my experience with people who know what i'm going through.
At this point i have gone from optimistic (the first year) to completely hopeless due to the recurrent infections i get from the scalp lesions. I wash my head everyday with a speciaised shampoo and once a week with Clobex (cortisone based shampoo) but because these are scalp lesions they don't heal optimally. Sleeping at night is at most times a nightmare and this is while i'm struggling to fall asleep due to the extreme pain. Once the lesions get infected i have to go on an atibiotic course which is very often and i am afraid that my condition may become resistent.
I got married a year ago and it was supposed to be the happiest day of my life but it was far from it cause i was so afraid of exposing my scalp which i never do cause i always wear hats. "The catch 22" here is that wearing hats is the only way i can hold on to some of my confidence and this exact thing is aggrevating my condition but how do live life to the full when you are always anxious and worried about how bad your scalp and face look.
I live in South Africa so obtaining some of the medication is quite a hassle and i really feel at times like i cannot go on, i am 27 years old with my first born on the way and my biggst fear now is that my unborn baby already has a predisposition of inheriting this dreadful condition.
The derm i'm seeing now has put me on Eythromycin 300 mg combined with Klacid 500 mg and i am now on the trial period. Right now my scalp is at the worst state that it has ever been. I have lost around 50% of my hair and it is severely scarred.........hopefully a change is gonna come soon as the song goes because i just cannot give up
I am both relieved and worried by reading everyones posts. I guess I first noticed this condition in the last few years of high school (2002-2003)...a very small crusty lump in the crown of my head...fiddled with it a little but never though too much of it for the next few years. Early years of uni I did start to notice that it was getting worse, to the point that my hairdressers were starting to notice and ask whether I was aware of what they were saying was severe dandruff. It has never hurt but been itchy on and off over the years. I finally decided to speak to a doctor, overcoming my embarassment and fear of what was going on in around 2008. I was treated like a guinea pig by the derm I was referred to and he brought me to his hair clinic in Melbourne where 'professors' and interns all had their go at looking at my scalp. I was given a multitude of topical solutions to use, tar shampoo, salicylic acid etc to remove the scaling/crusting. This worked but resulted in more hair loss as many strands has been 'tuffed' together and were only on my head by the fact the crust was acting like a glue. As a young 20 something female who prides herself on appearances, this was and still is very difficult for me to deal with. I was given a course of kefalin antibiotics which did very little and underwent a horrendous biopsy of my scalp, which I had very little anesthesia for. I went off treatment for quite a while, ignoring it seemed a better option. I went back to derm and and off for about 2 years and finally he put me on the 'trip therapy'. Rifampicin and Fucidin in addition to a cortosone cream and continuing with he salicylic acid to remove scaling. I went off that in Oct 2010 due to the fact that they made me feel very unwell...Despite the fact that is did clear things up immensely, I felt that my progress plateaued, and I found it difficult psychologically to continue. I have needed to go back to my derm since Jan 2011, and only just saw him today (July 2011). He has now put me on Monocycline to see if this helps given the other two, despite being effective, made me very unwell. I have taken my first dose tonight we will see how I go. Still on the S.Acid to clear scaling.
I have never really had the significant pustules, or the severe pain, only the occasional itch. My problem I guess is that I do not stick to any one treatment when advised to due to the fact that I can never see it getting better, I hear stories of people that have had it so much longer and more severe than I have and I think if they aren't better whats the point, I am not going to either.
The hairloss is my biggest concern due to not being in pain. I am now 25 and still very much pride myself on my apperance and my hair and to loose it would be unbearable, the patch I have is basically able to be covered, however if my hair sits the wrong way the patch is somewhat revealed, I am a school teacher and am constantly worried when I have my back to the class that my hair might move and reveal the patch when I wear it down. I am very self conscious of it, and only my father and partner are aware of it, even then I do not like to discuss it with them.
I feel for you all, and hope that one day a super treatment is found and will put us all out of our misery.
Good luck everyone, keep posting updates and filing us in.
Your symptons are pretty much exactly like mines - the tufted hairloss , the small patch etc , its identical .
Like you , I dont get the severe pusticles or the pain that other people get . I do get occasional itchyness .
Before going on my 1st dose of antibiotcs ( erythromycin ) i would get small pus filled pimples on my scalp . These disappear 99% while on antibiotics but start to slowly return when I become resistant to the dose . This happened after 9months of being on Erythromycin . I am currently on Doxycycline ( since jan.2011 ) and so far *touchwood* the pimples havent started . I also put on Fucibet cream and dalacin T . Although if im being honest i only do those once or twice a week - naughty i know . I also have issues swallowing pills so I need my antibiotics in liquid or dissovable tablet form.
My hairloss doesnt appear to have increased much . I am always soo scared of getting haircuts because I think it will expose the patch even more . So far , this hasnt happened and i can get haircuts every 7-8 months . But the future scares me and reading people's experiences on forums dont help .
These kept on coming and going every month depending upon the anti biotic i took.
It is 2011 and and the Folliculitis continue to really bother me.
There have been times when i have got over 100 boils on my scalp.
These are the following medicines i have taken but all of them giving me relief only for a week or 2 weeks maximum:
1. Augmentin 625 mg ( with Dapsone 100 mg ) (Fucidin & Nadoxin Cream)
2. Sefdin 300 mg ( with Dapsone 100 mg ) (Fucidin cream, Cetrilak soap & Selsum shampoo)
3. klox 500 mg ( T bact cream) (Fucidin cream, Cetrilak soap & Selsum shampoo)
4. Enhancin 625 mg (Fucidin cream, Cetrilak soap & Selsum shampoo)
5. Widcef 500 mg ((Fucidin cream, Cetrilak soap & KZ shampoo)
6. Isotane 20 mg with widsef
7. Injection Benzathin Pencillin
8. Lynx 500 mg with glacex
9. Xceft 100 mg with Absolut
10. Augmentin 625 mg with longin
11. Clamp 625 mg with Sotret 20 mg ( emoderm cream )
12. Rcin 600 mg ( Soapex soap, Selsum shampoo, fucidin cream )
All the above medicines were rotated once or twice and taken for 6 years.
Augmentin was taken for over 2 year with 2 months interval.
I have got blood tests done every year.
Here is the basic blood test report:
PUS culture test:
Sensitivity to cephalecin, ofloxacin, norfloxacin, ampicillin
REsistant to : Augmentin, co trimoxazole, chloramphenicol
I am 26 year old. Got Folliculitis in 2005.
If anyone can reccomend me some thing. i would appreciate it.
I have tried Homeopathy & Naturopathy but of no Success.
hello all, well its been a few years since i posted and wanted to give an update on my condition(Folliculitis Decalvins on scalp) and also see if anyone has the magical formula to get rid of this. I was on Minocycline for years prior to my post on this site about 2yrs ago. I started getting discoloration of my skin from the medication(is listed as a side effect) so i immediately got off it. Minocycline did a decent job keeping me at bay but i did break out from time to time where i needed prednisone(about 20mg) for a couple of weeks to calm it down. Prednisone is great short term but has side effects that scare you from using longer than u should(osteoperosis). So once i got off the Minocycline i went to Doxycycline for the last couple of years. Pretty much the same story, its kept at bay but my scalp still normally has dryness and pimples in certain areas of the scalp. I've had this condition now for roughly 17yrs and have lost alot of hair. The top of my head was first to go and now the front and sides are slowly losing hair. I used to cover it up but decided its just not worth it anymore. I've accepted that this is my fait and i think covering it up led to more stress. Which leads me to my next point. I believe stress is the biggest reason for the outbreaks. When i have alot of stress/anxiety, my scalp is on fire. At that point i take prednisone to calm it down otherwise i cant even wash or brush my hair. I started taking Xanex to take the edge off since i rarely just relax and believe its part of the problem. I actually am in the middle of a breakout so have turned desperate again. I am back on prednisone hoping it will calm the situation but after 2 days no such luck yet. I'm trying to calm myself down and relax over the next few days taking away stress in hopes to calm down the scalp. I feel dry scalp, i have pimple like marks all over my scalp and the back of my hair has alot of scabby type pimples that i pick at. There has to be a way to clear the scalp of this. I dont care at this point if that means kill all my hair, i will gladly live pain free and wear a wig if needed to give me one less thing to worry about. Please email me with any ideas or even just to compare stories. There's probably not many of us out there so we really need to stick together and fight this. email me at _[removed]_. Good Luck everyone, I agree we cant give up...it gets frustrating at times but there are others out there battling same symptoms, we really need to compare notes.
Cipro, isotretinoin, dapsone, maybe acitretin and recently some diabetes medication have shown some promise (actos) -- although Other similar meds have been taken off the market (avandia). Ive also heard of cellcept being used with success, but it can be very expensive. I would say starting out with a combo of rifampin with clindamycin or another antibiotic for 10-12 weeks sometimes up to 3 cycles would be reasonable then to move on to other options like isotretinoin/acitretin, dapsone, or cellcept if needed. Just my 2 cents. But, definitely a couple biopsies are worth establishing the diagnosis and ruling out other possibilities.
Thanks I think my girlfriend has this condition, if there is any other things you can think of please let me know Its sometimes hard for her to sleep at night and I'm trying to help her
i would like to know some of your inputs on this!! thanks