Clear scalp for seven years now 
rot
17 y
44,833
Hi I'm new to this forum
I had folliculitis decalvans for about 10 years. It was mis-diagnosed by my GPs for the first 8 years as assorted Psoriasis, eczema etc. The pustules and scarring eventually took over most of the back of my head.
Then on holiday to Japan, I went to a local dermatologist in Kyoto who prescribed clindamycin suspended in raw 100% isopropyl alcohol, applied topically three times daily. I thought at first that it would sting - but it was no worse than waking up with a pillow stuck to your head.
After two weeks it was clear. That was seven years ago.
I still shave my head to be more cosmetically appealing - and after each shave, polish off with an isopropyl alcohol wipe.
The scarring will never heal - but to be free of the pustules, the pain, and the embarassment of 10 years of infection is unbelievable.
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- Re: Clear scalp for seven years now kizzy
17 y
42,823
This is a reply to # 1,025,720
Hi Rot,
Question for you...What exactly is clindamycin suspended in raw 100% isopropyl alcohol? Are you mixing the pill form into the alcohol and dissolving?
Next thing, did you start shaving your head when you began this treatment or after it was clear? This might sound odd as well but do you shave with an electric razor or blade?
Reason I ask the last question.. Having suffered with this crap for 10+ years I note everything I do now.. A while back I shaved my head to put topical treatments right on the folliculitis and something amazing happened my folliculitis improved to the point it like I am normal (minus the scarring but that is life).
So, I have attributed the topicals direct application as the answer. BUT I also suffer with this condition on my neck now (uggggg). So I have been applying the topicals there now as well but have not see the dramatic results as my head.
For a while now my thoughts were well maybe my head condition was just burning off (like they always tell you will happen someday at the doctors). So I decided to try and let what hair I have left grow back in.. Guess what the folliculitis started coming back again (crappp). Quick shave and some topicals 2 weeks later looks better again minus another blood stained pillow case (wife was not to happy about that one lol).
So that raised a lot of questions in my every wondering mind. WHYYYY... I shave both my neck and my head... but!!! I use an electric razor on my face (sensitive skin) and a headblade razor on my head.. hum odd right.. Well I have always washed my electric razor with soap and water since I worry about spreading bacteria..
So talking with my doctor they suggested as well try shaving your face with a straight razor as well, heck can't hurt to try right? (well maybe hurts my face lol).. So the past 2 weeks now I am getting use to the new razor and you know what my neck looks the best it has been months... odd eh!!! Only thing in my life that has changed is using the straight razor... Could this be a corrulation?
Kizzy
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- Re: Clear scalp for seven years now rot
17 y
49,875
This is a reply to # 1,028,509Hi Kizzy
Wow - your experience sounds just like mine in so many ways.
OK - the story on the alcohol & Clindamycin. Like I said, I got this from a really groovy dermatologist in Japan who really knew his stuff.
I Just looked up Isopropyl Alcohol on Wikipedia - its the same as "rubbing alcohol".
Wiki says... Isopropyl alcohol (also isopropanol, iso, rubbing alcohol, or the abbreviation IPA) is a common name for 2-propanol, a colorless, flammable chemical compound with a strong odor. It has the chemical formula C3H8O and is the simplest example of a secondary alcohol, where the alcohol carbon is attached to two other carbons. It is an isomer of propanol.
Anyway the Doctor gave me these little bottles of alcohol, and some capsules of the Clindamycin (the same sort that you would swallow... and probably have swallowed over the past ten years). You break open the capsules, and put the powder into the alcohol bottle and mix it. Dab it onto your scalp regularly. I can not remember the exact dose of the clindamycin.
Re the shaving of head - I started that just before I went to this Dermatologist.
Like you - I think the combined shaving plus topical application does the trick, and the results were so dramatic and long lasting.
I can really relate to the shaved head and scar tissue look. But hey - at least its "CLEAN" scar tissue. No red inflamation or weeping sores. God I hated that. I would always sit in the back row of the theatre or any gathering because I would be ashamed that the guy behind me would be staring straight into my head. Now its just a bit of scar tissue - OK a lot of scar tissue. But even the thought of growing back my hair, which just highlights the scarring - and those damned corn rows. Nah - I'll stay shaved.
I shave my head three times a day. I use a Phillishave three rotating blades. Not a plug for philishave - but the motor is really really gentle and the whole thing pivots to the shape of my head. I tried the Braun. Great shaver - but a brutal motor - and the flat blade just doesnt follow the shape of the skull. I blade sheve my face and neck with Gillette sensitive disposables (although I tried my wife's leg blade shaver - a venus disposable - which was quite effective).
Like I said in my first post - I finish off with a rub over with an alcohol wipe. These are the Briemar alcohol wipes (70% isopropyl alcohol). They are the same ones that hospitals use to wipe down stainless steel instrument trollys etc. Again - not a plug, I just work in a hospital so I can get these by the box load :) Try these on your neck. I think they are brilliant. Oh - and I also use them to wipe off my Phillishave to keep the blades clean.
Thanks again for the reply. I must admit - I felt sooooooo alone for many many years.
All the best
Rot
- Re: Clear scalp for seven years now kizzy
17 y
42,049
This is a reply to # 1,029,225
Rot,
I hear ya.. Felt the same way till finding this site and connecting with a few people. I feel really bad for the ladies, because there really seems to be something to the shaving thing. I read a medical publication online about someone having laser hair removal because oh how bad the Folliculitis was for them. It indicated that upon removal of the hair the folliculitis subsided. This is what lead me to start shaving my head which was very successfull.
I use to be very very ashamed of my head and wore a hat to cover it. I literally only took it off at bedtime. People at the office use to look at me funny and sitting in a meeting with a VP was rough but still better in my mind then someone looking at my head.
After the inflammation subsided I slow accepted my fate changed jobs lol and lost the hat... A fresh start lucky for us bald is in style now!!
I have a large area on the top back of my head that is sunken down as well.. Just enough that is makes my head appear an odd shape. Doctor said its a side effect of the condition.... But like I meantioned above you get over and move on not scratching my head raw all day and night is worth dealing with the exposed scarring.
I do wish rot you could remember your dosage so we have some others try out the combination. Like how many pills you mixed with around how much Isopropyl alcohol..
You know we should start a Wiki page of our own about this condition!!!
One last thing - If you have not tried a headblade I would highly recommend it. They are a company geared for people that shave their heads and I have liked every product I have tried (the head gloss is fun!)
http://www.headblade.com/
Kizzy- Re: Clear scalp for seven years now rot
17 y
41,895
This is a reply to # 1,029,250Some amazing karma here....
I went out to my shed, and cleaned out my old suitcase - and inside the front pocket was the empty isopropyl bottle and the used blister pack from the clindamycin! They've been siting there for the last seven years. Bizarre.
OK - the isopropyl alcohol bottle is a 60 ml bottle.
The blister pack is in Japanese - but the brand name is Dalacin 150mg
I remember that it was two 150mg capsules per 60 ml bottle of alcohol.
I originally got four capsules and two bottles.
One bottle of the "mix" lasted about a week - and like you said in an earlier post Kizzy - it took about two weeks to get a really good result.
I can really relate to your hat story - I used a bandana (easier to wash)
The head blade looks FANTASTIC. I must see if they have a distributor here in Australia.
Cheers
Rot- Re: Clear scalp for seven years now Jujubee83
17 y
41,755
This is a reply to # 1,029,677Rot,
Thank you for more info. on your solution. I have one question. Is the Dalacin 150 mg in capsule form that dissolves in the Alchohol once you put it in? Do you spray it on or apply with a cotton swab or something else? How do you work around the hair on your head when applying? Did it actually cure your folliculitis or just bring down the symptoms for you? Where do you think I might be able to get ahold of some Dalacin and is the Isopropyl Alchohol a kind that you can't get in a regular store? Sorry for so many questions, but I'm anxious to try your solution.
Jujubee83- Re: Clear scalp for seven years now rot
17 y
46,704
This is a reply to # 1,030,412Hi Jujubee
Thanks for your posting
>Is the Dalacin 150 mg in capsule form that dissolves in the Alchohol once you put it in?
Yes. It was two capsules per bottle. You just split the capsule open (a quick twist) and empty the powder contents onto a piece of paper. Then just pour the powder into the bottle of alcohol. Give it a shake every time you use it. You get about a weeks worth out of one bottle.
>Do you spray it on or apply with a cotton swab or something else?
Cotton swab. Actually I used some of my wife's make-up remover pads to dab on the mixture. Thought it would sting - and it did at first, but then its quite soothing.
>How do you work around the hair on your head when applying?
Sorry - I had just started shaving my head before this intervention. But its just alcohol with clindamyacin... just dab it straight onto the scalp, hair and all.
> Did it actually cure your folliculitis or just bring down the symptoms for you?
Is this THE cure? Dunno. But after the treatment I was fine for the next seven years. Is it because of the shaving, or the clindamycin, or the regular alcohol wipes that I use - I dont know. But it is perfectly clear now. No redness, inflamation, pustules, pain, bleeding, weeping.... just the residual scar tissue.
>Where do you think I might be able to get ahold of some Dalacin and is the Isopropyl Alchohol a kind that you can't get in a regular store?
Your General Practitioner or Dermatologist would be the best one to see about Dalacin or any similar antibiotic. I would stress that this treatment was prescribed to me by my physician - Dr Okamoto (I think), on Kitaoji St near Kitaoji bridge in Kyoto Japan. He gave me the Dalacin and also the Isopropyl alcohol. I would recommend that you discuss this treatment with your own physician. You should be able to buy the isopropyl alcohol at your pharmacist.
>Sorry for so many questions, but I'm anxious to try your solution.
I understand your anxiety. While my condition was active it practically ruled my life. I really hope that this solution helps you - but again, I'm not a doctor. I can only pass on what worked for me.
On a really positive note - this intervention is so cheap. If it doesnt work for your particular condition - you are not spending a fortune on exotic oils and lotions. Before this treatment, I spent hundreds and hundreds of dollars on stuff that didnt work. The most that you'll be out of pocket for trying this will be about $20 (plus doctors fees).
Hope this information helps with your questions.
All the best
Rot
- Re: Clear scalp for seven years now rot
17 y
41,556
This is a reply to # 1,030,465Sorry
Correction needed.
Dr Okamoto was the GP.
The Dermatologist was Dr Komori (same Kitaoji address)
Give me a break - it was seven years ago in a foreign language.
Sorry
Rot
- Re: Clear scalp for seven years now rot
17 y
41,556
- Re: Clear scalp for seven years now rot
17 y
46,704
- Re: Clear scalp for seven years now Jujubee83
17 y
41,755
- Re: Clear scalp for seven years now rot
17 y
41,477
This is a reply to # 1,029,250Headblade....
Got one today.
Wow - smooth shave - but it BURNS.
It looks like driving it will take a bit of getting used to.
Nifty little device though.
Rot- Re: Clear scalp for seven years now kizzy
17 y
41,583
This is a reply to # 1,031,784
lol.. Give it a few shaves my first time I knicked the heck out of myself mostly because it shaves sooooo fast you just go go go!! Now that I am use to it hardly ever get a knick and does not really burn either.
Hope you like it! I know for me it reduced the shaving time a lot and gets a closer shave then my electric.
- Re: Clear scalp for seven years now kizzy
17 y
41,583
- Re: Clear scalp for seven years now rot
17 y
41,895
- Re: Clear scalp for seven years now gnanya
17 y
41,870
This is a reply to # 1,029,225My wife went to her doctor about a week ago about the results of a test that she did and they ended up talking about me. He gave her two containers of BENZA CLIN a topical gel for me to try on my after shave pumps. It cleared the pumps! and coincidently ROT joined our group and shared with us how he met with this Dermatologist in Japan who gave him Clindamycin and Isopropyl Alcohol and Kizzy who always looks out for us and asks about the questions that everyone else avoids to ask; the combinations and doses and how long you should be on it.
BENZA CLIN is a combination of Benzoyl Peroxide and clindamycin which are used to treat acne. You need a doctors prescription and we may not need probably to use ROT's for now until we know the exact combination and doses.
If I shave my head and put on the Benza Clin on the pumps on my neck I think it might work as it did on my face.
Good luck
Gnanya
- Re: Clear scalp for seven years now Jujubee83
17 y
41,764
This is a reply to # 1,029,474It sounds Gnanya, that you have the type of folliculitis that affects men's facial hair. I'm a woman and my folliculitis in on my head. Did your doctor say anything about it working on the type of folliculitis that is on the head? Can this stuff work even with hair? Since I'm a woman I'm in no need to shave my head like some of you men have done. What little hair I have left after 30 years I want to keep. I'm just not cut out to be Sinead O'Conner.
I realize some of you take anti-biotics a lot. I won't because they make me to sick and my folliculitis has built up a resistance to them. It's much more potent than it was 30 years ago. I'm hoping something like what ROT suggested (still need that formulation though) or the BENZA CLIN might work. I hate my dermatologist, but I have no idea how to find a good one, and even if I did, they'd have to be on my plan. I did meet with my dermatologists PA, and he was much more helpful when I saw him for stuff with my kids. I guess I'll try him and ask about this product.
Jujubee83- Re: Clear scalp for seven years now rot
17 y
41,974
This is a reply to # 1,029,500Hi Jujubee
Your posting has got me thinking a lot about someone who wants to keep her (or his) hair.
Like I said in an earlier post - I work in a hospital nursing department (admin) and one of our nurses is an avid plastic surgery nurse. He keeps pestering me to get corrective surgery to remove my scarring.
His argument is that now that I have control over the folliculitis, they can excise the scar tissue and I could then grow back a full head of hair. I've never taken him up on the offer (mainly due to cost and bother) but he reckons that it IS an option.
So my thoughts - and it really is only my opinion and feel free to totally disregard it - would be to (UNDER MEDICAL SUPERVISION AND ADVICE) ...
1. try shaving your head for a few weeks just to get the folliculitis under control.
2. once its under control consult a plastic surgeon
3. fix the scar tissue area
4. Grow back your hair.
If anyone stares, just tell them that you're on chemo.... that shuts them up very quickly.
If none of this is appropriate to your situation, then please just disregard it. My thoughts are just that this is an open forum to discuss options - because like you said... so many dermatologists are absolutely out of their depth with this rare disease.
Do please write back and share your thoughts.
All the best
Rot - Re: Clear scalp for seven years now gnanya
17 y
41,369
This is a reply to # 1,029,500Dear Jujubee83;
I did not shave my head yet and I was applying it the pumps on the back o f my neck with the hair and all and the pumps are going down. I do not want to be a pessimistic and I went last night to a walk in clinic and asked the doctor to give the prescription. I had to spell the doctor as he could not find it in the medical dictionary that he had at his office. It must be new product and it is a mixture of Clindamycin, as Phosphate, 1% and Benzoyl Peroxide 5%.
The doctor did not even know the dose so he just simply wrote one tube and follow directions! The pharmacist gave a 50g It is Gel.
You should try it atleast and you should not have to shave your head and it might work fr you.
Gnanya - Re: Clear scalp for seven years now Nissa94
7 y
10,753
This is a reply to # 1,029,500Hello,
I am also a female who had been living with hair folliculitis for 10 years. I have tried everything under the sun but through some research and ambition, I have found what I would like to call a cure for me. If it doesn't cure your folliculitis but it will definitely be life changing. Anyone here struggling with folliculitis will agree the itching and scalp flakes can definitely drive someone crazy. Well, I have been using NIZORAL Anti- Dandruff Shampoo. It contains 1% ketoconazole which kills all fungus and decreases inflammation on the scalp which will help the follicles to re-grow new hair. First time I have tried this shampoo changed my life. I used it twice a week. Then used it less and less until folliculitis is gone. God knows how much I needed this product in my life.
Well, I hope this shampoo helps. Please do your own research.
- Re: Clear scalp for seven years now rot
17 y
41,974
- Re: Clear scalp for seven years now Jujubee83
17 y
41,764
- Re: Clear scalp for seven years now kizzy
17 y
42,049
- Re: Clear scalp for seven years now rot
17 y
49,875
- Re: Clear scalp for seven years now gnanya
17 y
41,796
This is a reply to # 1,025,720I wish you visited us long ago when we were fed with all kinds of information from poeple trying to take advantage of our desperate situations by introducing products that they know would not do any good for us.
Tried but true is the information like this one we are looking for. Thank you from the bottom of my heart and I will definately try it and report it back to the group.
Gnanya- Re: Clear scalp for seven years now kizzy
17 y
41,532
This is a reply to # 1,028,522
Hey Gnanya,
I hear ya! After years of trying pill after pill and blood work after blood work to make sure no "serious" damage from the drugs is occuring.. I defenitly hear you.
Not sure who your post was directed to. I do think rot needs to provide a little more detail on his solution before we could really test anything.
In any case, I truly hope you find the solution that works for you.
Kizzy - Re: Clear scalp for seven years now rot
17 y
41,865
This is a reply to # 1,028,522Hi Gnanya
Thanks for your posting.
I wish I knew about this group years ago - I only stumbled over it the other day. Like I said to Kizzy - I felt really really alone for a very long time.
I suffered from this painful and disfiguring disease for about 10 years. At one stage, you could see a 2cm wide hole in my scalp that damn near went down to the bone. Thats still the toughest part to shave because the scar dips deep. The scarring now covers about half of the back of my head. But hey - a scar I can live with. People hardly even notice a scar on a bald head - and if they do ask, I tell them that I survived a "rare form of flesh eating bacteria". That always gets an "ooooooh wow" and is somehow "socially acceptable". Something that they can understand.
I know what you and Kizzy mean about pills and potions and expensive moisturisers. I even tried emu oil once - yuk. Waste of time and money that one was.
Part of the problem was the early mis-diagnosis. For years it was being treated as a psoriasis, an excema, a fungal infection, worms..... pill after pill, stronger dose after stronger dose.... blood tests to monitor for liver damage.
Look - I hope it all goes well for you. The feeling of being "clean" - yeah, thats the best way that I can describe it - clean.... but there is a cure out there. Mine worked for me - I hope it helps you too.
Let me know how you go.
Cheers
Rot
- Re: Clear scalp for seven years now silks
17 y
41,912
This is a reply to # 1,029,235Hey Everyone
I'm new to this forum, and I'm really glad I found it! I have been suffering from this condition for a really long time and it's nice to finally relate to some people and their stories.
I first noticed the issue with my scalp & neck back in high school (I’m 26 now) since then I have seen multiple doctors, dermatologists but none of them have really helped or cared about my condition. (At least it seemed that way)
I have now found a dermatologist who has shown some interest in helping me out. So far we have tried Rifadin & Clindamycin in pill form to help combat with the redness & itching which seems to work but as soon I stop the medication it comes back right away. Obviously I’m nervous about continuing with this medication for extensive periods of time as it is very strong and the other conditions that may arise from taking it scares the crap out of me.
The worst part of my condition is the left side on the back of my head (the hair is mostly gone now) I have always been able to hide the bald spots with a comb over but the condition has begun to spread and it’s now time to face reality. So today I came up with enough courage and decided to shave my head. At the moment it looks very bad and I’m nervous about returning to work looking like this. My scalp is VERY dry & red but I did apply some Fucidin ointment directly to the scalp and let me tell you, it feels great to have some instant relief from the dryness and itching!
I’m planning on making an appointment with my dermatologist this week; I will mention the “Isopropyl Alcohol/ Clindamycin mix” and I will ask about the “Benza Clin” to possibly try. What other prescribed “topical treatments” were you all using? I’m hoping to try as many things as possible and get this under control.
Thanks for your time
-Silks
- Re: Clear scalp for seven years now kizzy
17 y
41,469
This is a reply to # 1,030,879Welcome Silks,
I have done many rounds of the Rifadin & Clindamycin combo myself.. I call it more of a bandaid.. Gives you a little relief but you should not be on it longer then 4 months due to the sideffects.
There is now a Foam form of the Clindamycin antibiodic that all but eliminates the side effects. I have used this foam along with Olux (anti-inflamitory for the itch) with a lot of success..
Kizzy
- Expand 20 messages, 21 to 40 of 54 rot
17 y
41,815
- Re: Clear scalp for seven years now kizzy
17 y
41,469
- Re: Clear scalp for seven years now silks
17 y
41,912
- Re: Clear scalp for seven years now kizzy
17 y
41,532
- Re: Clear scalp for seven years now kizzy
17 y
42,823
Expand 14 messages, 41 to 54 of 54 Jujubee83
17 y
41,675
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