• Forum Upgraded: https://longhaircareforum.com/threads/recent-forum-upgrade.849851/

Hair Loss - Possible CCCA

05girl

Active Member
Hello All,

Longtime admirer and lurker, first time subscriber & poster!

I wanted to share my experiences and see if there were any insights on there from other readers.

(Note that I get relaxers every 8 weeks). My hair always grew as long as I regularly saw a stylist. In my college years, I would get some healthy growth, go broke and the hair would break off when I could not afford a stylist. For years my hair meddled in neck-length/bob/ stages, barely ever grazing shoulders. My sisters have always had longer hair, with my younger sister having gorgeous BSL hair her whole life. So, i always felt that it had to be possible for me to get to some growth!

In 2006 I began experience crown breakage. It was also around this time that I began my HIH syndrome (bad, I know, but i can't stand shedding). I was seeing a stylist regularly by then (woo hoo a real job). She just made it work/blend. I then moved and began seeing the stylist I saw in college. After a few weeks she said she could not blend and chopped my hair into a cute short look (spring 2007). So since then I've been growing it back. The crown area began to grow.

I'd say in the last of couple of years the crown area would grow, then break, then grow. Eventually there was a perpetual short-spot - a few cms in length, maybe an inch in width. My stylist said it did not look like chemical breakage. Luckily never to the point that I needed another big cut (my hair has stayed neck-length). I began noticing over the last few years that sometimes (maybe every 6-8 weeks) the crown would get sore and itchy. Sometimes I'd scratch & pull the hair at the root, sometimes not. And again, my hair sits b/w NL and SL.

Then in Sept my soreness/itchiness returned. The breakage area grew... still, from what I'm told, it blends. I finally decided to see a (black female) dermatologist. I had a scalp biopsy. I was just told the results - 2 conditions are affecting the area. the primary condition is follicular degeneration (basically female pattern baldness, caused in part by genetics). No females in my family have hair loss though. The second condition is scarring alopecia. Luckily I have no bald spots currently - just a big area of really short hair. Probably going to get injections in the area and also treat with antibiotics. I'll learn more at my next appt.

I've tried googling a bit, and results seem mixed. What does stand out is that the CCCA condition sounds like a mix of my 2 conditions. Unfortunately most of the CCCA sites I find just seem like re-gurgitated information.

Anywho, that's my story. Fingers crossed I can get this growth back!
 
Last edited:

BoaterGirlKim

Active Member
Welcome! Sorry about your diagnosis of CCCA (central centrifugal cicatricial alopecia). You might be able to find some useful free journal articles using PubMed, the library database of the National Institutes of Health. I'm a science writer at NIH but you don't have to be affiliated to access the articles. Just type in your topic in the home page search box, select an article from the list of abstracts, then click volume number or Full Article option and select visitor/student/guest options (sometimes screens are different but that's the general jist). In the meantime, here a couple of links to articles. Since they are written for a medical/clinician audience, the language can get pretty technical but you may find some new information. Good luck!

Kim
MD Consult -- Start Session Cookie Error

Central centrifugal cicatricial alopecia - Whiting - 2008 - Dermatologic Therapy - Wiley Online Library
 

beana

Well-Known Member
Unfortunately i dont have any info to add, but i've battled the same condition for years... The hair in my crown area feels like steel wool sometimes and my scalp is always sore in that area but my scalp appears to be "normal" there. I must say that both the irritated feeling and urge to touch that area went away while i was in my sew-in.
 

Sade'

Well-Known Member
Unfortunately I have had this problem for years. I have a bald spot in my crown that is smooth and the follicles are dead. I currently wear a net weave and luckily I have not experienced any damage from wearing my sew in.
 

05girl

Active Member
@sade & beana - wow, so no new growth in the area? Mine seems to grow and break. I would not say mine is as rough as wool... My next doc appt is next Tues so I am anxious to go and find out more about the condition.

Thanks BoaterGirl for the links!
 

Sade'

Well-Known Member
@sade & beana - wow, so no new growth in the area? Mine seems to grow and break. I would not say mine is as rough as wool... My next doc appt is next Tues so I am anxious to go and find out more about the condition.

Thanks BoaterGirl for the links!
No new growth at all. Smooth like the back of my hand w/ no pores. I also had a biopsy done and have visited countless dermatologists and trichologists. I think it's good that you caught it early and still have hair in that area. Be aggressive about your treatment and don't let it get worse.
 

beana

Well-Known Member
05girl and Sade'

I know the CCCA thread was old, but I wanted to respond to you (even if its months later, sorry). I stopped relaxing my hair in July 2010 with the hopes my scalp soreness would stop. Im happy to report that my scalp soreness has improved greatly and that wearing weaves have kept my mind off of that area and allowed it to grow. My hair texture is still more coarse and rough there, but I do have hair and its normal density.

Please keep in mind, that I do not have an advanced case of CCCA at all.

My mom has a pretty advanced case of CCCA and im trying to help her come up with a plan to combat it. I plan on doing black tea rinses for her to start with just in case there is DHT build up on the scalp. I also plan to research different *natural* anti-inflammatory treatments for her as a huge part of CCCA is the inflammation.

Hve you had any success in dealing with and treating this condition? If so please share. Thanks!
 

Sade'

Well-Known Member
@05girl and @Sade'

I know the CCCA thread was old, but I wanted to respond to you (even if its months later, sorry). I stopped relaxing my hair in July 2010 with the hopes my scalp soreness would stop. Im happy to report that my scalp soreness has improved greatly and that wearing weaves have kept my mind off of that area and allowed it to grow. My hair texture is still more coarse and rough there, but I do have hair and its normal density.

Please keep in mind, that I do not have an advanced case of CCCA at all.

My mom has a pretty advanced case of CCCA and im trying to help her come up with a plan to combat it. I plan on doing black tea rinses for her to start with just in case there is DHT build up on the scalp. I also plan to research different *natural* anti-inflammatory treatments for her as a huge part of CCCA is the inflammation.

Hve you had any success in dealing with and treating this condition? If so please share. Thanks!

To the bolded...I am doing the exact same thing.Weaves have not made my hair suffer at all, thank goodness. Thanks so much for responding beana .
CCCA is very devastating and not talked about much.
I do not have any success stories. All I know is that is continues to spread at a very slow pace. Almost unnoticeable, then I look up and see a wider spot. I have been to countless doctors who have told me there is no possibility for re-growth.
Let me know if u guys know something that I don't.
 

chicha

New Member

mzsophisticated26

New Member
I was diagnosed with mild case of CCCA back in May 2010 and on top of that I was diagnosed with hypothyroidism. I started to use minoval for about a month which helped a bit but I always forget to apply it and also it was a little drying. My dermatologist( who is AA) said that there is really no treatment plan for it but to stop all relaxing, coloring, tight hair styles, wigs, weaves, tight rollers etc. He also said years ago they called it "hot comb alopecia" because they only saw it in AA women that hot combed but now alot of women different races are starting to get it. He said that he knows that AA styling practices may play part. I can't even wear side parts because they are so wide due to thinning areas. I barely can get aways with middle parts and when I wear my real hair I have to use the black hair spray or black coloring stick so you can't see my scalp in the top of my head:sad:
 
Last edited:

Sade'

Well-Known Member
I was diagnosed with mild case of CCCA back in May 2010 and on top of that I was diagnosed with hypothyroidism. I started to use minoval for about a month which helped a bit but I always forget to apply it and also it was a little drying. My dermatologist( who is AA) said that there is really no treatment plan for it but to stop all relaxing, coloring, tight hair styles, wigs, weaves, tight rollers etc. He also said years ago they called it "hot comb alopecia" because they only saw it in AA women that hot combed but now alot of women different races are starting to get it. He said that he knows that AA styling practices may play part. I can't even wear side parts because they are so wide due to thinning areas. I barely can get aways with middle parts and when I wear my real hair I have to use the black hair spray or black coloring stick so you can't see my scalp in the top of my head:sad:

mzsophisticated26 The hair in your siggy is pic beautiful! I use Toppik hair fibers to fill in the spaces toward the front. I also use Couvre lotion to dark or color my scalp. It's a lot of steps but it works.
@ the bolded...do you wear wigs or weaves?
 

rosieposey

Active Member
Hi OP:wave::wave:,

I do not have much to add as far as suggestions. But just showing my support! I was diagnosed with alopecia in the crown as well. Skin has grown over a good amount of my follicles. I'm glad to hear you caught it early! And wish you success on treatments:yep:
 

mzsophisticated26

New Member
Sade...thx for the compliment, yes i wear half wigs b cuz they are less stress and my crown, temple thinning really makes my healthy hair look bad. My siggy pic is the first time i wore my hair since jan. I still have to wear 2clip in bang pieces in the front, the back of my hair has no issues so its so frustrating.

I have been wanting to buy toppik for awhile, does it look natural?
 

Sade'

Well-Known Member
Sade...thx for the compliment, yes i wear half wigs b cuz they are less stress and my crown, temple thinning really makes my healthy hair look bad. My siggy pic is the first time i wore my hair since jan. I still have to wear 2clip in bang pieces in the front, the back of my hair has no issues so its so frustrating.

I have been wanting to buy toppik for awhile, does it look natural?

Yes it looks natural as long as u pick the right color. I usually apply it right after I get my hair done and it stays til my next wash.


Sent from my iPhone using LHCF
 

chicha

New Member
05girl
beana
mzsophisticated26
Sade'

I would say start on the anti dht shampoo Nizoral the 2% strength asap.
Then start on Saw Palmetto (internally) and MSM (internally) and MN or MTG (topically).

I would do these to start the ceasing of the shedding. Then I'd find another regimen that works if I couldn't keep up with this one. I've added 25mg of Spironolactone to my regime. My hair was shedding horribly but now only 5 a day.

A hair loss specialist told me that I was racing against time. Dht will kill your hair follicles and they will grow no more. You must remove the dht as much as possible and start hair to growing in those areas before the follicle completely closes. This is why I rec. using Nizoral the 2% prescription version asap (the only known shampoo to remove dht) every 2-3 days until you find something else to help you.

BoaterGirlKim I love those articles! I read them all the time to find out what's PROVEN to work! Thanks for the confirmation.
 

mzsophisticated26

New Member
Thanks Chica, do i need a dermatologist to prescribe that poo, i need a new derm b cuz the one i was going to really did not want to do much in terms of treatment like creams, injections etc. Also which saw palmetto, the one i see always say prostate health..lol
 

chicha

New Member
mzsophisticated26 Yes a dr would need to prescribe it. Until then get the 1% at Walmart. I use the Walmart Saw Palmetto blend (it also has Pyguem, Beta sisterol and other dht blockers). Use for at least 3 mos with other stuff before you see a reduction. MSM also further reduced my shed. I started at like 200 mg and worked up to 2000 mg. Start LOW and drink a FULL glass of water with it. Those 2 and the shampoo will help reduce your shed.

The poo can be very drying. Apply to scalp only let soak on scalp during duration of shower. I make plats during my shampooing, hold them up while rinsing the Niz as not to get it on my hair.
 

05girl

Active Member
Hi everyone!
I wanted to update this thread for any researchers on here.
I was in fact diagnosed with "scarring alopecia" which is pretty much CCCA... part hereditary and part external causes.
For treatment, I began getting steroid shots to my scalp every 4 weeks. I think I got 4 rounds of shots from December - March. I also applied a steroid foam to the scalp. I also took some biotion (i think it was 3000 mg). And the biggest change.. I stopped getting relaxers - roughly 20 years since my first relaxer!
My area definitely began growing in and I stopped getting the crazy, itchy sore feeling. The hair from the crown isn't totally blend in with the rest of my hair length, but it is a LOT better. Now that's it's been a few months since my shots, sometimes I still feel bothered by the area (sometimes the itchy thing starts up). And I'm always convinced I'm practically bald in that area, even though I'm not.
 

Sade'

Well-Known Member
Hi OP:wave::wave:,

I do not have much to add as far as suggestions. But just showing my support! I was diagnosed with alopecia in the crown as well. Skin has grown over a good amount of my follicles. I'm glad to hear you caught it early! And wish you success on treatments:yep:

rosieposey how do u currently wear your hair?
I have CCCA and I cannot camouflage my hair loss without a wig or weave. Otherwise I wear a bun.


Sent from my iPhone using LHCF
 

Sade'

Well-Known Member
Hi everyone!
I wanted to update this thread for any researchers on here.
I was in fact diagnosed with "scarring alopecia" which is pretty much CCCA... part hereditary and part external causes.
For treatment, I began getting steroid shots to my scalp every 4 weeks. I think I got 4 rounds of shots from December - March. I also applied a steroid foam to the scalp. I also took some biotion (i think it was 3000 mg). And the biggest change.. I stopped getting relaxers - roughly 20 years since my first relaxer!
My area definitely began growing in and I stopped getting the crazy, itchy sore feeling. The hair from the crown isn't totally blend in with the rest of my hair length, but it is a LOT better. Now that's it's been a few months since my shots, sometimes I still feel bothered by the area (sometimes the itchy thing starts up). And I'm always convinced I'm practically bald in that area, even though I'm not.

05girl this is great news! Congrats
to your progress. Thanks for posting this info.


Sent from my iPhone using LHCF
 

chicha

New Member
Thanks Chica, do i need a dermatologist to prescribe that poo, i need a new derm b cuz the one i was going to really did not want to do much in terms of treatment like creams, injections etc. Also which saw palmetto, the one i see always say prostate health..lol
mzsophisticated26 clarification any dr can prescribe. You can also purchase online from Canada if you can't get it. It may take about 2 wks to get it though.
 

beloved1bx

Well-Known Member
@mzsophisticaed26, in the meantime you can buy the over the counter version, which is only 1% but might be enough to start you off. It's called nizoral, and you can find it with all the other dandruff shampoos at the drugstore. It comes in a box that starts white and fades into blue.

I used it years ago, and it curbed by shedding significantly. That was the beginning of my hair journey though, and i stopped because my hair was way too dry. I might need to re-visit this once I use up something else in my stash.
 

chicha

New Member
@mzsophisticaed26, in the meantime you can buy the over the counter version, which is only 1% but might be enough to start you off. It's called nizoral, and you can find it with all the other dandruff shampoos at the drugstore. It comes in a box that starts white and fades into blue.

I used it years ago, and it curbed by shedding significantly. That was the beginning of my hair journey though, and i stopped because my hair was way too dry. I might need to re-visit this once I use up something else in my stash.

You are so right it will rob your hair dry of moisture. And that ws the 1% version. I HAVE to use the 2% and it dries and tangles and hardens to no end.

You have to use a nozzle and only apply to scalp, plat hair and pre condition.
 

Sade'

Well-Known Member
I am going to make an appt to begin my steroid injections again. I am not wearing a sew-in right now & my scalp is so irritated.


Sent from my iPhone using LHCF
 

EMJazzy

Happily retired
I am going to make an appt to begin my steroid injections again. I am not wearing a sew-in right now & my scalp is so irritated.


Sent from my iPhone using LHCF

Everything you have posted about your hair is what's going on with my hair *exactly*....I'm going to keep an eye on this thread for possible solutions. <sigh>

Sent from my DROIDX using DROIDX
 

chicha

New Member
Is this condition the same as diffuse thinning in the crown, edges, front part of the head? I have female family members who have that.

This sounds like male pattern baldness. Its dht baldness problem. I have this same thing

- diffused thinning
- extra thinning/baldness temples, crown, top of the back of head, edges
- receding hairline

And boy is it a itchB~
 

Candy828

New Member
I don't have anything to add on the condition.... but I do know something about hard to grow crown areas. Go for you treatments or whatever your doctor recommends, but in your hair routine try adding some of the homemade regrowth recipes from here:
http://hairrecipes.homestead.com/hairlossrecipes.html

I personally have experienced exceptional crown growth. my crown use to feel like wire and be much shorter, but it's now smooth and long. I always had to do dusting on individual strands in that area while it was shorter. I always added tea tree oil to my mixes because it's an anti-fungal essential oil.

I wish you the best of luck for a resolution to your problem.:rosebud:
 
Top