Suffering from Folliculitis Decalvans, please help

[Livehappy1985]

I do not have FD but "regular" folliculitis and it also sucks. I have had it for 10 years now (26) and like most of you I tried every medical solution but nothing seemed to work. Lately I have been eating curcumin powder everyday and probiotic pills to balance out all the antibiotics I´ve used during the years. It actually helps bring the inflammation down significantly. I also tried cutting out all the sugar/carbohydrates during a couple of weeks and every single pustule went away, even the redness and itching. But when I went back to my normal diet it all came back, so I´m going to try that again and if it works, I´ll let you guys know.

CLN SHAMPOO CLEARS IT UP!!! Please pass this on!


So I've suffered with foliculitis decalvans for about 15 years I'm 32 years old. At about 17 years I got a pimple that would itch and bleed if scratched at the crown of my head. I thought nothing of it continued to wash my hair daily and thought it was probably from surfing everyday and possibly the ocean with all its bacteria. It wasn't until about 2-3 years later when I noticed a small infection on my scalp probably the size of a pea that I went to urgent care to see what it was. They prescribed all types of ointments and it never fully went away so I went to my gp and he prescribed more topical stuff and still never really went away. with no luck I just continued to wash my hair daily in hopes it would go away I tried otc shampoos like selsen blue, head and shoulders etc...finally after about 5 years in I had a scar about the size of a quarter and tufts of hair emerging out. I figured it was time to go back to the dr this time he sent me to a dermatologist. The first dermatologist I saw prescribed more topical creams and ointments and told me it's probably because my hair is so thick and curly it's causing this infection. So again no luck with the topical solutions I went back throughout a course of about a year and still no luck with any medications prescribed. I decided to try a new dermatologist as my scar was starting to get bigger. The 2nd derm to look at my head instantly New what this condition was and labeled it tufted foliculitus aka dolls hair. He put me on a course of antibiotics including rifampin and clyndamicin for 6 months. After treatment my scalp had cleared only to return about a year later. I let it slide for about a year and returned back to the derm after scar got bigger. He put me on another round of antibiotics this time around I got c-diff and got extremely sick. After this I pretty much told myself I was done with antibiotics and asked if there was another alternative treatment he told me there was but that this medicine had lots of harsh side effects he called it isotretinoine aka accutane. Before trying it I consulted my neighbor who is a world class eastern medicine practitioner. I asked him if he knew of any herbal remedies that might clear this up. So I tried some herbal medicine he put together and so no results. Long story short ended up going on accutane and saw no results after 6 months. Finally I was ready to give up and asked my derm if there was anything else anything I could do besides taking anymore medications. He recommended a bleach bath and then informed me there was a new shampoo out called CLN. I ordered this stuff about 2 weeks again and well within 3-4 days my scalp was practically cleared up. I see a lot of reviews of people saying it didn't work for them but I can attest that it worked for me. I will continue to use this shampoo. ThanksCLN

 

[Edward Aguilar]

Hey Guys! I'm making a Facebook group for "Folliculitis Decalvans" but I need to add some friends first before they let me create it. It will make it easier to share our stories and share information. Add me on facebook
Eddy Ruiz
/edward.aguilar.946
email: foxeddie07@yahoo.com

 

[Edward Aguilar]

I went ahead and created the facebook group under "Folliculitis Decalvans, LPP and Dissecting Cellulitis" since many people such as myself get misdiagnosed with all these terms. Its a new page so feel free to request to become a member. Lets get together and share. Thanks!

 

[Edward Aguilar]

Hi,

I have had FD for about ten years. I got to the stage where I was using the rifampicin and clyndamyacin combination 3-4 times a year. A visit to my local chemist suggested the use of a bacterial wash (I use phisohex) but I don't think it matters. The bacterial wash has stopped the pustules for the past three years, however the previous scarring remains and the hair loss (to the crown) continues (at a much slower rate).

Worth a try
Paul

Hi Paul:

I created a facebook group under "Folliculitis Decalvans, LPP and Dissecting Cellulitis" since many people such as myself get misdiagnosed with all these terms. Its a new page so feel free to request to become a member. Lets get together and share. Thanks!

 

[Ben Milligan]

It would be good to join your facebook group. I searched it but couldn't find the group.

I see people have mentioned CLN shampoo, what CLN product did you choose? I have tried a few different shampoos with no effect so I am eager to try CLN. I am also going to try thr pro-biotic advice and the coconut oil.

I am glad your still all trying to find solutions.

 

[Iphigenia]

It would be good to join your facebook group. I searched it but couldn't find the group.

I see people have mentioned CLN shampoo, what CLN product did you choose? I have tried a few different shampoos with no effect so I am eager to try CLN. I am also going to try thr pro-biotic advice and the coconut oil.

I am glad your still all trying to find solutions.

CLN SHAMPOO CLEARS IT UP!!! Please pass this on!


So I've suffered with foliculitis decalvans for about 15 years I'm 32 years old. At about 17 years I got a pimple that would itch and bleed if scratched at the crown of my head. I thought nothing of it continued to wash my hair daily and thought it was probably from surfing everyday and possibly the ocean with all its bacteria. It wasn't until about 2-3 years later when I noticed a small infection on my scalp probably the size of a pea that I went to urgent care to see what it was. They prescribed all types of ointments and it never fully went away so I went to my gp and he prescribed more topical stuff and still never really went away. with no luck I just continued to wash my hair daily in hopes it would go away I tried otc shampoos like selsen blue, head and shoulders etc...finally after about 5 years in I had a scar about the size of a quarter and tufts of hair emerging out. I figured it was time to go back to the dr this time he sent me to a dermatologist. The first dermatologist I saw prescribed more topical creams and ointments and told me it's probably because my hair is so thick and curly it's causing this infection. So again no luck with the topical solutions I went back throughout a course of about a year and still no luck with any medications prescribed. I decided to try a new dermatologist as my scar was starting to get bigger. The 2nd derm to look at my head instantly New what this condition was and labeled it tufted foliculitus aka dolls hair. He put me on a course of antibiotics including rifampin and clyndamicin for 6 months. After treatment my scalp had cleared only to return about a year later. I let it slide for about a year and returned back to the derm after scar got bigger. He put me on another round of antibiotics this time around I got c-diff and got extremely sick. After this I pretty much told myself I was done with antibiotics and asked if there was another alternative treatment he told me there was but that this medicine had lots of harsh side effects he called it isotretinoine aka accutane. Before trying it I consulted my neighbor who is a world class eastern medicine practitioner. I asked him if he knew of any herbal remedies that might clear this up. So I tried some herbal medicine he put together and so no results. Long story short ended up going on accutane and saw no results after 6 months. Finally I was ready to give up and asked my derm if there was anything else anything I could do besides taking anymore medications. He recommended a bleach bath and then informed me there was a new shampoo out called CLN. I ordered this stuff about 2 weeks again and well within 3-4 days my scalp was practically cleared up. I see a lot of reviews of people saying it didn't work for them but I can attest that it worked for me. I will continue to use this shampoo. ThanksCLN

 

[Iphigenia]

Hello everybody,

I would like to say in my case the only antibiotic that controls this is clindamycin and rifampin together. I see some people get a complete cure. For me, no such luck yet (at the 3-month mark.) Apparently FD needs to be treated with this combination for 3 to 7 months. I hope this helps someone. Also, for me, doxycicline did not work, minocycline did not work. They are worth a shot I think for some people, however the rifampin clindamycin combination is much better. Ask your doctor or dermatologist. You must take strong probiotics from a health food store that are stored in the fridge though, as these wipe out your gut bacteria. You've got to replenish that. The danger is that clindamycin may wipe out so much gut bacteria that you may get c difficile, which would obviously be very bad. So, you must take probiotics.

 

[Iphigenia]

Hi -- Try covering overnight with household bleach, conditioner, neem leaves, tea tree oil & mint oil. Bleach should be about same percentage as in a bleach bath. This added to the antibiotic treatment seems to help a lot. Best of luck!

 

[Nathan38]

Two things I use that are simple and easy and clear up the scaling if used regularly. I refused to take long-term antibiotics and trial and error have helped me find these cheaper and effective solutions. Interesting enough, neither of these options are medicines.

1. 50 SUNBLOCK: (cheap brand at a dollar store) I found this out accidentally while at the beach. I now apply a quarter sized dot on my hand and rub it into my affected areas on my scalp after my daily shower and the scaling never builds up anymore.

2. BAG BALM (you can find it at your local Walgreen) This took more work, but also was effective in removing the scaling - it's like Vaseline, so I applied it before going to bed at night. - I no longer do this, as I have found the sunscreen to be more effective.

I know everyone is different - give these a try. It took me years to find these solutions, so I wanted to share them with you too.

 

[HankPentagon]

Hi. Sorry to hear about your condition. I have been suffering from the same affliction for over 20 years- I am now 49. Unfortunately there has been no cure found-you just have to manage the disease, live with it and try to accept it. I am currently on topical antibiotic erythromycin which controls the spread of the disease. The Rifampicin/Clyndamycin is effective for several months and does drastically reduce inflammation when it is effective. Keep trying this over the years. You should try Isotretinoin which maybe effective-it is normally used for severe acne. I hope a definitive cure is found soon and you will benefit.

Does simple salt water help????

THey used to recommend sea salt to spray on transplants to foster healing.

Also there are salt water pools now

Nothing to lose.

 

[GoldenW]

Hi, I was diagnosised with FD in May and first thing the dermatologist told me to do was take Minocycline twice a day. This was somewhat (barely) effective. I saw him again in 6 weeks then he put me on oral Cortisone for 14 days while taking Minocycline twice daily. Cotisone was really effective until I had to stop taking it because taking too much isn't good. Another 6 weeks went by (Which was August 15) and I was given Cotisone injections into the infected areas (while still having to take Minocycline twice daily). My dermatologist told me that'll I'll see him every 6 weeks for Cotisone injections. Hopefully this method works, I'll post updates on how this Cortisone injection method is going for me.

(Minocycline was used as an attempt to use one antibiotic to bring down swelling and minocycline to keep it under control after the swelling as went away)

 

[Q311]

I’ve had FD for maybe 13 years now. About 4 or 5 years ago, I finally met with a doctor who diagnosed it as FD. He pointed me to CLn shampoo, so I started using it every other day. Honestly, this stuff’s been awesome. I haven’t had anymore bloody spots on my pillow, nor pain in my scalp ever since I started using it. There’s still scarring on my head and the follicles are bunched up, but I’ve had an open sore on my head maybe only once or twice a year in the time I’ve been using it. Like I said, I use it every other day, massaging it into my scalp at the beginning of a shower, and then letting it sit while I do the rest, finally rinsing it off at the end. The days I don’t use it, I just use some regular brand shampoo. Do a google search for clnwash shampoo, and the first page that comes up is where you can order it.

Hope this helps someone out!

 

[Justink]

Hi has anyone tried tar shampoo?

 

[SahotaG]

Hello everyone,

Guys it isn't FD that most of us are suffering from its HS (Hidradenitis Suppurativa). Please research and seek help.

Thanks

 

[SahotaG]

There is even a tedx talk on it and hope it relates. There could be discussion forum as this on HS which we are not aware of.

 

[Iphigenia]

I have suffered from this for over 4 and a half years, but I am losing hope fast. I am a 20 year old college student with an embarrassing disease called Folliculitis Decalvans (FD), but scalp diseases are often misdiagnosed so I am not 100% confident that is what it is. I have underwent several biopsies and cultures and the consensus from the Chapel Hill, Duke, and Wake Forest specialists is FD. Essentially, I get constant painful pustules or bumps on my scalp which causes hair to fall out and leaves behind a scar, destroying the follicle and resulting in patchy bald spots with visible scarring. I have tried almost every combination of antibiotics, corticosteroids, shampoos, foams, gels, and natural remedies I could find. The leading theory of it's cause is an abnormal violent host-immune response to the bacteria S. Aureus, which has been found in my cultures. The worst part is knowing my body seems to be doing this to myself and that there may be an obscure treatment that may resolve everything that I just haven't found. I go through several pillow cases a month due to the blood spotting, and constantly worry and check mirrors to make sure my pustular bald spots are not completely visible. I cringe every time I see the clumps of hair fall out in the shower, and when I'm out I assume people are looking at my scalp. It is attacking my confidence and driving me into depression at an age where I should be getting ready to graduate and begin my career. Any help at all would be greatly appreciated, I'm at the point where I've lost my drive for self improvement and my desire to even leave the house. Please, is there anything you could suggest that might stop the scarring and hair loss? I am currently on Rifampin 300mg twice daily and Clindamycin 300mg twice daily along with a 6% salicylic shampoo, but it is losing effectiveness and the pustules are occurring more frequently. Septra (Bactrim) DS once a day kept it from progressing for awhile but also lost effectiveness after about 7 months. Thank you for any help you can give.

 

[Iphigenia]

Hi Guys,
I have this too. Try mixing about 30 - 40% bleach yes, you heard that right, bleach, with herbal essences "deep moisture" shampoo. Add a few drops of pure mint oil (NOW brand is good -- but you can try any brand) and leave it on. I leave it on overnight. Also, the clindmycin rifampin is the best for me. Good luck. If this works -- post back!

Oh -- I do this and have not had any side effects. That does not mean it's safe for you. Start with perhaps a lower percentage of bleach, and don't leave it on too long the first time. I have had no burning, no problems. But I'm not a doctor. Be smart. Be safe etc. Start small, see how your body reacts.

 

[MattFD]

Man I have suffered for over 10 years. I wish I treated it early. Well I didn’t and now I have scarring and bald spots. It’s s so depressing I’m always wearing hats. When it’s off all I feel like is that people are just looking at my head. Just recently I tried this shampoo called cln. I have never had this much relief ever. All the antibiotics,topicals, injections. That have been prescribed for me did what this shampoo has done for me. It cleared it up no more bleeding, the sores are healing. I guess my hair loss is permanent which sucks but I have regained control of my scalp. I’m hoping for the day that I can shave my hair off once everything heals. I just hope the scars don’t look to bad to do so ugh.

 

[MattFD]

CLN SHAMPOO!!!!

So I've suffered with foliculitis decalvans for about 15 years I'm 32 years old. At about 17 years I got a pimple that would itch and bleed if scratched at the crown of my head. I thought nothing of it continued to wash my hair daily and thought it was probably from surfing everyday and possibly the ocean with all its bacteria. It wasn't until about 2-3 years later when I noticed a small infection on my scalp probably the size of a pea that I went to urgent care to see what it was. They prescribed all types of ointments and it never fully went away so I went to my gp and he prescribed more topical stuff and still never really went away. with no luck I just continued to wash my hair daily in hopes it would go away I tried otc shampoos like selsen blue, head and shoulders etc...finally after about 5 years in I had a scar about the size of a quarter and tufts of hair emerging out. I figured it was time to go back to the dr this time he sent me to a dermatologist. The first dermatologist I saw prescribed more topical creams and ointments and told me it's probably because my hair is so thick and curly it's causing this infection. So again no luck with the topical solutions I went back throughout a course of about a year and still no luck with any medications prescribed. I decided to try a new dermatologist as my scar was starting to get bigger. The 2nd derm to look at my head instantly New what this condition was and labeled it tufted foliculitus aka dolls hair. He put me on a course of antibiotics including rifampin and clyndamicin for 6 months. After treatment my scalp had cleared only to return about a year later. I let it slide for about a year and returned back to the derm after scar got bigger. He put me on another round of antibiotics this time around I got c-diff and got extremely sick. After this I pretty much told myself I was done with antibiotics and asked if there was another alternative treatment he told me there was but that this medicine had lots of harsh side effects he called it isotretinoine aka accutane. Before trying it I consulted my neighbor who is a world class eastern medicine practitioner. I asked him if he knew of any herbal remedies that might clear this up. So I tried some herbal medicine he put together and so no results. Long story short ended up going on accutane and saw no results after 6 months. Finally I was ready to give up and asked my derm if there was anything else anything I could do besides taking anymore medications. He recommended a bleach bath and then informed me there was a new shampoo out called CLN. I ordered this stuff about 2 weeks again and well within 3-4 days my scalp was practically cleared up. I see a lot of reviews of people saying it didn't work for them but I can attest that it worked for me. I will continue to use this shampoo. ThanksCLN

Is it still working for you? Also did you regrow any hair?

 

[SteveK]

Hi has anyone tried tar shampoo?

Helps a little with the dandruff and itching. Not a longer term solution.