A Bittersweet Light At The End Of The Tunnel? Andrea’s Hair Loss Story

by admin on November 2, 2007

A Bittersweet Light At The End Of The Tunnel? Anrea's Hair Loss StoryHi girls,

I wanted to write with regard to all the women on this forum, and specifically because of a recent post I read from Rosalinda. Her story sounds similar to mine, and I recently had an eye-opening dermatologist appointment that I haven’t had time to write about until now.

Let me start out with my hair loss story:

I first noticed my hair loss when I was 18 years old, 4 months after I started taking ortho-tricyclen lo. My hair had been coming out quite a bit in the shower but I didn’t think anything of it because I had incredibly thick hair. You know, hair so thick it makes the hairdressers cringe when they have to blow dry and style it because they know it will take like, an hour. I wish more than anything I could say the same about my hair today! One night as we were about to go out my boyfriend said he was a little concerned that he could see parts of my scalp through my hair, and asked whether it could be due to my pill. Well I became alarmed by my hair loss and began researching it extensively. I got bloodwork done at two different clinics with everything being normal, but I asked them to switch my pill anyway. I picked Yasmin because it is supposed to have anti-androgenic effects. That was 3 years ago. The hair loss never stopped, and my diffuse thinning kept progressing. I have probably lost 2/3 of the hair I used to have… when I put my hair in a ponytail it is barely the size of a sharpie marker. I have been hesitant to quit my pill altogether because I’m afraid I will go through the “dread shed” telogen effluvium and lose even MORE hair. I also get terrible cramps, heavy, long periods, and acne (my face is pristine when I’m on the pill though). However, I’m not really sure if it was my pill that caused it because I do distinctly remember mentioning in the past that my hair felt thinner and easier to manage than usual (this was when I was about 17, as I was getting ready for a homecoming dance). It is all so confusing and difficult to pinpoint. As trivial as most people think hair is, this has been the most traumatic and challenging experience of my life. Sometimes I have to stop myself and thank my lucky stars that I am healthy and I have a good life and my hair isn’t everything. But some days, hair really does feel like everything.

This month, I hit a major turning point. I had a scalp biopsy done by my dermatologist, expecting nothing to turn up. When I walked into his office 2 weeks later for the results I got a diagnosis I had never dreamed of or never researched. Scarring alopecia, due to Lichen planopilaris. My heart hit the floor. SCARRING… seemed so final, like the death sentence for my hair. My dermatologist seemed a little more optimistic though. He said it’s an infection of the scalp, no one knows how you acquire it, it’s just kind of a freak occurrence (why me??). My scalp hadn’t looked inflamed at all, but he said it showed mild inflammation under the skin when the biopsy was analyzed. Even weirder, lichen planopilaris normally presents itself as a patch of hair loss, rather than diffuse. I am still a little skeptical about my diagnosis, but I am following the protocol: antibiotic (minocycline) and topical steroid (olux foam). Together these are supposed to reduce the inflammation under my skin and help stop the hair loss. My derm also said I could try the Rogaine 5% once per day to try and revive some of my recently attacked follicles. He wasn’t sure if it would work though because I don’t have androgenic alopecia. We shall see. When I left the dermatologists office I just broke down and started bawling. Partly out of relief that I could possibly control the fate of the rest of my hair, and partly out of extreme frustration. I had been shouting from the mountaintops about my hair loss to every doctor that would ever listen, and none of them did anything until now. I shudder to think this could have been prevented.

After using the olux foam for a week, my scalp looks incredibly white now. I had always thought my scalp was just tan because my hair is thinning and it causes the exposed skin/part to sunburn. It now seems that my scalp WAS in fact slightly inflamed, not tan or sunburned. I am still considering experimenting with getting off of the pill, but I’m still really scared about shedding more. I may do it after I graduate college this May… don’t want to be bald in my graduation photos :(

The moral of the story? LADIES, GET A SCALP BIOPSY. don’t give up, keep bugging your doctors, bug multiple doctors until you get some kind of peace of mind. The best thing I ever did for myself was to keep pushing and being proactive. My hair may not grow back, but at least I feel like I’m more in control of my situation than ever before. My derm wants me to check in with him every month to see if I’m making progress so I will keep everyone updated on how it goes. If all else fails, I found a great wig shop close to me (in Houston) and I’ll just buy one and get on with my life!

**********************************

Dear Andrea,

Thank you for writing and sharing your story. I never really gave much thought to scarring alopecia, I had read about it in passing while researching my own hair loss, but for some reason I always just overlooked it as I’m sure many women do. I am so glad you told your story and let other women know about your experience and about how getting a scalp biopsy was instrumental in determining the cause of your hair loss. Your diagnosis and cause of hair loss could be the same reason other women are losing their hair. I am sure there are plenty doctors who probably don’t even consider it since most of the time they fluff it off as stress or genetic, and send you out the door with a bottle or rogaine and a lot of confusion. I understand your hesitancy for getting of the pill as I am in the same position as you. I would like to get off of it, but continue taking the pill for fear that I will be thrown in to an excessive telogen effluvium, so for now I will take it indefinitely.

Thank you again for sharing your enlightening and also encouraging story. It sounds like you found the right doctor. I’m so hopeful and optimistic that your hair loss improves with the continued use of your prescribed treatment. It must be somewhat reassuring to be able to pinpoint your hair loss cause, for most women their hair loss causes remain unknown. After reading your story I understand the title of your email. Your positive attitude shines through and I smile when I read your words “If all else fails, I found a great wig shop close to me (in Houston) and I’ll just buy one and get on with my life!” Amen to that.

~Y

{ 125 comments… read them below or add one }

jeni November 2, 2007 at 4:38 pm

I’m glad you found a doctor that might know what he’s doing. I’ve had the same problem with doctors – all of them sort of dismissing me, and none of them really knowing much about hair loss. I had hair loss when I was on ortho tri-clycen (I was on it almost 10 years), and I stopped taking it. I was off it at least a year, with no changes to my hair loss, so I started Yasmin. It’s been a few years, and my hair loss is the same, but the Yasmin really helped clear up my acne, and improved my mood. If I went off Yasmin, I highly doubt my hair loss would improve, and I’d probably have a dread shed, and get the acne back.

I had never thought much about scarring alopecia either, since I don’t see any physical signs on my scalp of a problem. However, I do notice a few pink/red circles on my scalp that seem to always be there. The last Dermatologist I went to prescribed me Olux foam as well! He said my scalp appeared slightly inflamed, and he also gave me some sort of special shampoo. I used them for a few months, and the doctor said my scalp looked better, but because I saw no changes in my scalp or hair loss, I thought he was sort of making things up to make me feel better. Now I’m wondering if I should go and have a scalp biopsy since I’ve never had one before.

Hopefully the new treatments you are on will really help!

andrea November 2, 2007 at 9:45 pm

Jeni,
I really recommend the scalp biopsy. Scalp problems were the VERY LAST thing on my list that i expected. I had no scalp problems at all, I just had the scalp biopsy done because I was desperate, but I never thought anything would come of it. So you can imagine my shock when I got the diagnosis… if anything, it will allow you to narrow the field and rule out any kind of infection or inflammation. Don’t give up girls!

tboz November 3, 2007 at 5:54 am

I recently had scalp biopsy for hair loss occuring during summer, and received dx scarring alopecia. Md said cause was unknown, but maybe because of chemical usage. I am afro american and have been using relaxers in hair since about age 12 i am currently 35. Hair was always thin but since last november crown area started getting really thin, during summer got worse, so i bit the bullet and cut hair to shortest part where it had broken. hair is like a mini afro, i used to have medium length bob hair. I also was have began using rogaine 5% and ocuflox. Now there are 2 family members that have hair loss, but my pattern is different. As you all know a womans hair is her glory, and i am trying to remain positive, for now i just wear wigs, and actually today am going to check out a new wig called lace front supposingly the stars wear them like tyra banks etc. I am happy for this site and i will try and keep u posted.

andrea November 10, 2007 at 6:43 pm

hi everyone,
i just wanted to give a little progress report on how my treatment is going. I am still on my birth control, but I’ve been taking the minocycline (antibiotic) twice a day, and using the olux foam (topical steroid) once a day after i get out of the shower. I’ve also been running a little experiment and using 5% rogaine on a tiny area of my scalp to see if anything happens. theres no point in slathering tons of rogaine all over my head if it’s not even going to work… hence the experiment :) It’s been about 3 weeks now, and of course it’s much too soon for any regrowth to be seen, but over the past week or so my shedding has decreased dramatically!!! now, i hesitate to say this because i don’t want to jinx myself, but i thought maybe it would give some of you a little hope! reducing hair loss is the first step of the recovery battle, and i’m just praying and hoping and wishing that i haven’t spoken too soon and my shedding stays low. usually when i get out of the shower and comb my hair i’m used to seeing about 20-30 hairs in the sink or on my shirt (which seems like a lot when you don’t have much hair to begin with!). yesterday and today there were maybe 4-5 hairs. i’m really hoping this treatment helps me keep whatever hair i have left, and maybe regrow some of the hair that hasn’t been damaged by scarring too much. i’ll try to keep updating you guys, and until then please keep me in your prayers! and i will do the same :) hope everyone is having a good hair day!
-andrea

admin November 11, 2007 at 12:57 pm

Hi Andrea – Congratulations on your decreased shedding!!! That is so awesome and so good to hear. You are very right when you say reducing hair loss is the first step to the recovery battle and I’m happy to hear about your recent victory. Only seeing 4-5 hairs! Wow! I’m like you, I hate to jinx myself. Yesterday my fiance was saying that he could see a visible improvement in my hair and I said I didn’t want to talk about it or jinx myself :)

Thank you so much for sharing your recent success it does give other women hope

~Y

Amanda November 26, 2007 at 7:39 pm

Andrea,
I am 19 years old and am experiencing a very similar story to yours. I recently moved away to college and suddenly started loosing a TON of hair. After weeks of stressing over this, my sister in law took a look at my scalp and noticed red cirles with some flakey skin. TODAY i went to my dermatologist and she perscribed me Olux foam and recommeded the 5% rogain as well. I just used the Olux foam for the first time and i think it made my hair fall out MORE. but i’ll stick with it and try the rogain out as well. I really hope i am able to regrow my hair, as i had very very thin hair to begin with and loosing it has really made it a lot worse.
Thank you for your story. Keep us posted!
Blessings,
Amanda

Kayla November 27, 2007 at 9:46 am

Hi Amanda- (and everyone else!)
I am a 19 year old college student as well. I have had alopecia for about 9 years now and wanted to let you know that if you ever need anyone to talk/vent to I am always available and can absolutely relate to you. I have tried both the Olux foam and the rogaine. Of the two I found the rogain to be more helpful.
Please keep us posted on your results :)
Best wishes,
Kayla

andrea November 29, 2007 at 7:59 pm

hi everyone,
another little update at the 1.5 month mark: my shedding has stayed low (about 5 hairs after brushing after a shower) and i saw my dermatologist last monday. He is keeping me on my antibiotics for another 6 months or so, and attempting to decrease the dose of the olux foam gradually. Both of these are intended to keep my scalp inflammation down for who knows how long. My derm says that lichen planopilaris is kind of unpredictable and not fully understood, so we have to just kind of play the treatment by ear. I haven’t seen anything yet (I wish hair didn’t grow so slowly!), but I’m really hoping that I can begin to see some regrowth in the next few months… keeping my fingers crossed!!! After 3 years of losing my hair i’m hesitant about being optimistic, but since my shedding has stayed low i’m cautiously venturing out of my hold of pessimism :) wish me luck!
andrea

admin November 30, 2007 at 2:43 pm

Hi Andrea, That is such good news. 5 hairs after brushing and shower, Congratulations! I still dream about that day myself :) It really seems you’ve found the right solution to your hair loss and I couldn’t be more happy for you. Be patient with the hair growth, it does take forever and a watched pot never boils, I’ve frequently stared at my scalp looking for new hair growing in. I even looked to compare thickness to the other hairs.. crazy.

I’m really excited for you, stay positive and keep us posted!

andrea December 2, 2007 at 2:07 am

oh i forgot to mention that i’m also alternating between nioxin and nizoral (non-prescription) every other day… in case anyone would like to know.

tracie January 7, 2008 at 7:30 am

andrea-which doctor in houston did you find was useful? also, which wig shop? i am looking for a dermatologist that will specialize in this matter, and they are hard to come by. thanks.

andrea January 9, 2008 at 9:02 pm

hi tracie,
actually the doctor was in austin (I go to the university of texas) and his name is dr. schaefer with the austin dermcare clinic (www.austindermcare.com). the wig shop was in houston ( my hometown) and the website is http://www.bethelwigsonline.com/Home_Page.html

they have some very encouraging client photos and carry lace front wigs as well… let me know if you need any more info!

Tiffany January 29, 2008 at 1:49 pm

HI Andrea
I have been arguing with my dermatologist for months to try to do a scalp biopsy and finally tomorrow she has agreed to do it. She says that she can’t see scarring so it is pointless to do a biopsy but I am losing my hair very fast. It started in May and now it has fallen out out to wear I can see my scalp on certain areas. Just curious did you ever going to a dermatologist and they said it didn’t show scarring when they were just looking at it? Thanks for the updates your story is encouraging.

lori February 1, 2008 at 5:34 pm

Please don’t believe that nonsense about not seeing any scarring. If a dermatologist tells you such, it’s time to get a new one. The scarring is not on the surface of the scalp; it’s the follicle that is attacked. Last time I checked follicles aren’t visible on the scalp surface.At best, all you might see is some scalp redness. If I had only been as wiser 5 years ago when I encountered a similar dermatologist who simply told me the usual story about how normal it is to loose a certain amount of hair; she simply cultured my scalp for a fungus, gave me a topical steroid and sent me home. The culture came back negative, so the treatment stopped–if it had been a fungus the steroid cream may have caused more damage. My point… So many dermatologists have no clue about hair loss and simply do nothing but watch you loose more hair. I have cicatricial alopecia and since it’s been 5 years before a dermatologist finally (one out of 6) performed a biopsy and started the appropriate treatment, it is unlikely that my hair will grow back or stop falling out.
Here is an excellent website to visit which will tell you all about scarring alopecia: http://www.carfintl.org/faq.html . Please get educated and become your own advocate. Even though I have this disease, I refuse to give up. I’m still searching for a new dermatologist as my current one has given up on me. She said she has tried all of her tricks on me and nothing seems to work. So, clearly it’s time to move on. Well, good luck and make sure that you when you see your doc you go armed with knowledge and suggestions for your care. Be sure to take a list of all of your symptoms—i.e. itching, burning, tingling, pain, etc. One last thing…Every dermatologist I saw had the same message: You have a lot of hair so I don’t think you’re loosing much and you won’t go bald. If I could only send all of those jerks pictures of my diffuse hair loss–you can now see my scalp; balding is on the horizon. And to think, I believed “The great doctors.”
As a nurse, I have loss complete respect for a lot of doctors, especially dermatologist, and I am now on my own mission to research and beat this disease. There are, however, some great dermatologist out there, I just haven’t met them—most are doing research or are too far away. Well! That’s all from my perspective. Sorry if I sound jaded, but as you know, hair loss is devestating. Good luck!

Tiffany February 2, 2008 at 4:06 pm

Thanks for writing Lori! My scalp biopsy was done on Wednesday and I am now awaiting the results. She once again told me that this was a waste of time but I said I didn’t care I wanted to know what it was. I wish they would look at us as people and not just another number. I feel like saying to her if this were you you would be the same way wanting to know how to make it better and to find out what it is. Thank you for all the info. I will look on that website and learn more about it. So if it does come back that it is fungal then if they give you medication to treat it does the hair grow back sometimes? Also I do have itching and burning in my scalp sometimes. What does that indicate usually? I also heard the same comment your hair is thick so I am sure no one can tell that you are losing it! I cringed when she said that. She had no care in the world about me or trying to help me with my problem. Just wanted to rush me out of the clinic. Thanks again for all your help and knowledge! I really apprecaite it!

Andrea February 14, 2008 at 10:17 am

Hi Tiffany,
Lori is right, your derm should be exhausting every avenue of investigating your problem, because my derm didn’t think it was scarring either but thought the test would be a good idea anyway. He and I were very surprised at the results of my biopsy and diagnosis. Initially my scalp had not seemed red or inflamed, maybe just a little pink. But after using the olux foam and taking the antibiotics for a short time I realized that my definition of a white scalp had been wrong! My scalp started to look ridiculously white (yay!). Lichen planopilaris is chronic, so it won’t go away but it can be treated. My derm put me on an antibiotic not to cure it but to keep inflammation down and keep the rest of my hair in my head. Last time I had an office visit he tugged on a few sections of my hair and ran his fingers through and nothing came out! whew! I think I am still slowly improving, although I have to face the fact that I will never have a full head of hair again. Please keep us posted on how your test results came back! I will try to keep everyone updated on my progress… please cross your fingers for me!
Best,
Andrea

Heather February 27, 2008 at 1:24 pm

Hi Ladies!

I am so happy to have run across this website and hear all of your comments. Like Andrea I have always had a head full of hair that every hair stylists commented about. But, about 6 weeks ago I started having serious burning and pain on my scalp and suddenly noticed my hair was looking thinner. I went to my doctor who said he noticed no signs of any kind of alopecia but that he would send me to a dermatologist to make me feel better with a second opinion. When I saw the derm I told her my concern about my hair thinning and that I was worried it could be serious. She did a pull test on one spot of my scalp, didn’t even bother to look at much of my scalp and told me not to worry about it until I started loosing close to 500 hairs at a time. What? I’m trying to stop that from happening not sit by and wait until the damage is done. I asks about a biopsy but she told me it would be pointless as she wouldn’t know where to biopsy because she saw no obvious irritation. She basically said we’d treat the symptoms of the pain & burning with Nizoral, Luxiq foam & some oil. Contact dermatitis was her diagnosis. While the “symptoms” have lessened my hair loss has not. Just when I wash my hair and comb it out I’m loosing 100 hairs and my hairline is becoming really thin. I keep looking at old pictures of myself to see if I’m imagining the hair loss, I don’t think I am. After reading you’re comments on here, I think I’ll go back to my family doctor and asks for a referral to a new dermatologists. Any other suggestions from you ladies would be welcome. I’m trying not to freak out to much, but when you’ve been the girl with the fabulous head of hair & all of the sudden it starts disappearing and no one believes you, it’s scary!

Fondly,
Heather

leyla March 3, 2008 at 1:06 pm

hey beautiful ladies..

we all have similar situations and it feels good sharing and reading stories. I came across this webbpage today and it was today that I was diagnosed with scarring alopecia – the doctor did not even do any scalp biopsy, glansed at my bald patches once and was ready to prescribe me some corticosteroids.. Somesthing is wrong! About 5 years ago i was diagnosed by another dermatologist with alopecia areata and she recommended as well the CS, however, with no result. Tomorrow I will talk to my professor of dermatology and ask for a scalp biopsy.. clearly there must be something in this “nothing”..

I am devestated and so scared, very scared.. I dont want to loose my hair which has been a very good feature of mine since my childhood.. For some ppl this may be about vanity, but I can´t describe the pain.. Just to sum it up: it hurts mostly to know that its an unknown cause and not under my control..

i´ll keep you girls updated after my scalp biopsy..

best wishes always!!!

leyla March 4, 2008 at 8:06 am

Today, I got to see my professor in dermatology and he ordered me an appointment for a scalp biopsy for tomorrow. Since i live near by the university hostpital I got to stand face to face with my first dermatolgist who diagnosed me with scarring alopecia without any scalp biopsy, and I saw the shame in her eyes!! She knew she should be ashamed of herself for not being careful and for perscribing me medications that could have made my conition even worce. Felt good to know that my professor had a “talk” with her.. maybe next time she will think twic before sending me off to the pharmacist a.s.a.p..

I am just so happy that i came across this webbpage in time .. a real blessing.. thanks to the determination of people like andrea, i was inspired to do the same.. don´t give up! no matter what, don´t give up..

write to you soon..

Sharon March 12, 2008 at 12:16 pm

I had a diagnosis of scarring alopecia due to discoid lupus. I’m a 50 year young married woman. My hair was never thick but now it’s so thin. I have a great specialist at Yale-New Haven in CT and she has me on clobetasol 5%. The top of my head is burning red with pimples and I have approximately 6 bald patches ranging from small to not so small. Fortunately, I’m able to conceal them with hair products, hairstyle and hair spray. Sucks!! So, does anyone have any idea how long this will last, will I lose all my hair and when can I expect to feel like a “normal” woman again?

I’ve been on the internet since I was diagnosed. I too will search until I find some kind of “cure”. I can’t understand how in this day and age, there’s no way to control my burning, pimpley and balding head!! If I sound angry, I’m sorry. I have some days that I forget I even have a problem. My scalp feels good, not many zits and my hair stays in place. Then I wake up the next day and I’m in pain.

I appreciate any feedback or friendship…

Kristen May 7, 2008 at 12:23 pm

Hi ladies!

I’ll start by saying that Andrea’s story is such an inspiration. I never knew (prior to my own hair loss problems) just how persistent you must be when trying to get a diagnosis.

I am a 23 year old female and have been noticing a LOT of hair coming out in my brush, shower, or even when I run my fingers through it (I have a hair pile in the car!) I have been on birth control pills (Levora) for about a year but just switched to Ortho-Cyclen a few weeks ago because I learned of Levora’s high androgen potency (I wish my old doctor had told me about the side effects before prescribing them to me..) Anyways, went to a dermatologist today hoping to get some answers. They drew some blood to run some tests, and I go back in 2 1/2 weeks to get the results. I asked what we would do it it came “normal” on everything, and he only told me Rogaine but said he could do a scalp biopsy if I wanted. Are the biopsies painful or do they leave a bald spot in your head? If anyone has undergone one please let me know :)

I can’t begin to describe how depressing and frustrating this has all been… I have lost SO much. Don’t give up and remember count your many other blessings!

Kristen May 7, 2008 at 12:34 pm

Also, I have a question about the scarring alopecia:

When you were diagnosed, was it just the top part of your head that wasn’t “white” or was it all over? My part is a little red/orange but I’m not sure if it’s just the sun because the other areas I can see aren’t really colored.

I can sympathize with a lot of you on here.. my hair is still “normal thickness” according to most and when my md did the hair pull test, nothing came out, but then when he is gone I brush it and 100+ hairs come right out form the root with no problem. I don’t want to be seen as a hypocondriac or crazy, because I really do have a hair loss problem, I just don’t want to wait around until I’m bald to do anything about it! It’s extremely frustrating and disappointing that the people put there to help you don’t want to!!

Chanell May 20, 2008 at 8:07 am

Thanks so much for all of your stories. I’m 34 and was just diagnosed with LPP this past Friday. I feel like my life is over after all a woman’s hair is her crown and glory right. But after locating this site I feel there is a chance at living a normal life. I feel like less of a woman ever since this has happened to me and I don’t know how to tell my boyfriend in fear of losing him. Although I know it’s just my insecurities taking effect. Anyway thanks again for posting your stories.

MW June 20, 2008 at 12:57 pm

Ask your doctor about DPCP- a short name for diphenylcyclopropenone. I have had alopecia areata (AA)since 1990. I have had great success with DPCP, going from complete baldness to a head full of hair. DPCP is not easily obtainable. My prescription is filled by a pharmacy 1.5 miles from home. It is also expensive, $140 for the prescription. Considering the benefits, it it worth the cost.

Lisa July 30, 2008 at 12:35 am

I noticed the BCP Yasmin mentioned a couple of times above and I just wanted to say that Yasmin in particular has been known to cause hair loss in some people. I think it’s something to do the with the lower levels of estrogen in it. Although I know it works well for some people I would do some research and think very carefully before going on it. It didn’t agree with me at all and my hair has thinned considerably since I went on it.

Lille September 2, 2008 at 11:09 am

I was diagnosed with LPP about a month ago after getting a biopsy done. The scalp was numbed, so the only pain I felt was the actual anesthetic being injected, some one asked if you have a bald spot after the biopsy but there is no bald spot, the amount of tissue was so small that I can’t even find the tiny scar on my head anymore.
My scalp was also red along the part line, but now I know that my whole crown is red.
Since my diagnosis I have had about 12 steroid injections on various spots on my head to try and get the inflammation down, but I am still losing hair. I am also using Clobetasol .05% once a day and taking Orecea (antibiotic) I guess it’s used for people with rosacea but it helps with skin inflammation so my Dr. thought it might help. I also take 5000mcg of Biotin a day and also a new suplement that I saw on a morning news channel that has had wonderful results in people with non-scarring alopecias, it is called viviscal and I am not sure if it will work, but I am willing to try anything.
I haven’t tried any of the rogaine products yet, i am not sure that it will help me. Has anyone had any success with it?

Thanks!
Lille

admin September 2, 2008 at 1:54 pm

Hi Lillie –

It is my understanding that LPP (Lichen Planopilaris) is an inflammatory condition so I don’t think that Rogaine would be good to use. I can’t state anything definitely, as I am not a doctor but logically it doesn’t seem like it would be a good idea. Some people find Rogaine makes their scalp itchy or red, all signs of inflammation in itself, so it doesn’t sound like something that would be good for Lichen Planopilaris.

If you are considering it, you should definitely talk to your doctor about it first before grabbing some from over the counter. Lichen Planopilaris is different than female pattern hair loss so I think it probably has its own course of treatment which it seems like you are already doing.

Welcome To The Site!

Best,
~Y

Lille September 4, 2008 at 10:31 am

Thanks Y!

I was wondering if anyone has heard any new updates from Andrea?

I am in Austin also and I am thinking about making an appointment with her Derm. I have been on my current treatment for about a month and I have not seen any improvement at all. I am thinking about getting a second opinion as far as course of treatment.
I am taking Coozar for High Blood Pressure and Seasonique (birth control) and I am seriously considering stopping both medications for a while and see if that makes any difference.

Thanks – Lille

admin September 4, 2008 at 10:57 am

Hi Lille – I haven’t heard from Andrea in awhile, but I’m going to email her and ask if she can come to the site to give us an update.

Birth Control pills can definitely cause hair loss, and not to pick on seasonique but I wrote a blog post about their commercials here: https://www.womenshairlossproject.com/hair-loss/seasonique-birth-control-pill/

Having said that it isn’t so cut and dry. Sometimes getting on or off can trigger hair loss, so stopping the pill could worsen your situation. And.. to make it more confusing even though the pill can cause hair loss, a low androgen index pill is sometimes prescribed to treat hair loss, level out the hormones I suppose. For example, the pill Loestrin (high androgen) caused my hair loss and one of the treatment prescribed to me was Ortho Tri Cyclen (low androgen) to treat it. In all honesty I wish I never got back on the pill and just had given my body some time to work it out, but now I’ve been on Ortho for like 9 years and certainly feel trapped that I can’t stop it for fear of the huge shed that will surely follow. I know for some women Ortho was the actual cause in the first place. So ho hum, what to do, what to do.

If you are in the infancy of your hair loss it may be worth considering stopping the pill. If I could fly back a few years into the past, even after having been on the ortho for a short time, I would have gotten off. I had more hair then, so I could shed a lot and still have hair on my head. Nowadays things are different. For myself the only time I can consider dropping my aldactone and the pill will be when I’m resolved to just shaving my head and wearing a hair system, and not a day before. I hope I muster up the courage sooner than later, and just reclaim my life.

All The Best,
~Y

Leah VanHoose November 10, 2008 at 10:29 am

I had my tubes tied back in Feb of last year. At the same time I went off of Depo-Provera(injectable birth control)after 14 years(which alopecia is a side effect and you are not recommended to be on for more that 2 years)(of course no doctors ever informed me of this). I noticed considerable hair loss on the sides and back of my head around July then by October I went to the doctor. He confirmed Alopecia by sight and sent me to a dermatologist who also by sight confirmed Alopecia. No scalp biopsy was ever done. Just steroid shots in my scalp. The hair grew back, then proceeded to fall out again. I have decided it is NOT worth having steroid shots ever month causing who knows how much havoc on my system to have hair. I am now bald as a damn bat. I am VERY angry with my doctor since he contributed my hair loss to my running of a marathon. He did order some blood tests, but never followed up on any of them. The derm never even tried to figure the cause. They only want to fix symptoms with drugs and never fix the actual reason for the hair loss. I am so sick of the medical community. They are nothing but a bunch of drug pushers. I now have an appointment with a nurse practitioner who like to get to the bottom of issues so hopefully someone will help me get my hair back. Until then every one I see assumes I have cancer which drives me crazy because I could not be any healthier. Good luck to the rest of you and if I find anyone that can actually help me I will let you all know.
Best,
Leah

Angela November 13, 2008 at 2:09 pm

Hello ladies

I just want to say to all of you that you are all so beautiful, and no i don’t know what you look like but thats not what beauty is right? Beauty is something you earn from being a good person, not something you were born with. This struggle is something so many people will never understand, and because of it you are more empathetic and understanding and caring. To me, that is so beautiful.

I am a 22 year old girl, and my doctor just told me i have female patterned hair loss ( a nicer word then baldness i think). When i found out i cryed and cryed, and i was so scared to tell my boyfriend because i thought he would leave me for a girl with beautifil thick shiny hair, and not want an ugly hag like me (i have been the meanest person in my life to myself). After glooming around our apartment for a couple days refusing to shower for fear of more hair falling out, i decided to give myself a good kick in the butt and give myself a make over, and NOT on the outside. I had to make over who i was on the inside and learn to love her. My docter gave me a form of rogain, and i have been on it for 3 weeks, nothing has changed but these things take time so i have hope. Even though he said it was female patterned baldness i refuse to believe him, no one in my family, both female or male, have suffered from hair loss so how can i randomly develope it? And at the age of 22? I think not! So i did some research and i have come to the conclusion that my birth control has been the biggest problem in my life since i took it, 3 months ago i stoped taking it and low and behold…my hair is falling out like crazy. I cant even put it in a pony tail without my scalp showing, so i have a vast collection of really funky hats i like to wear. I gave up brushing my hair long ago and i dont let my boyfriend touch it, and i woud never dye it either so i’m hoping the hair that DOES grow back isnt grey. At least i’m off those devil pills as i like to call them, and even though i’m baby free i really regret the choice i made. I’m sure all of you know the heartbreak you feel of watching your hair fall out.

Andrea, i would really love to know how the treatment is working for you, give a young girl hope! Please! It’s so embarrassing going out anywhere because all i do is stare at other girls hair and dream of having it on my own head. I get so spacy because all i do is day dream about having beautiful thick hair that i could style, and play with. I wish i could be as pretty as what seems like 99% of the rest of the woman out there, but nope. A problem like this always seems to happen to “someone else”, you never dream as a little girl that you’re going to grow up bald. But….i do believe i am beautiful despite my hairloss, and even though i avoid the mirror at times i still like working out and making sure teh REST of my body is healthy, and i enjoy make-up like any other young woman. This is a struggle i havn’t even told my family of, they live in another city so they can’t see me anyway and question me. Thats the worst, i hate the questions. Someone was staring one day, so i looked at them and said “why the serious face? Would you smile a little more if i did a dance? look at the bald girl dance!” Least to say they ran off, but at least i got a smile on MY face! (even though inside you cant help having those feelings of saddness..) Its good to let people know that yes, i have a problem, but No, it doens’t control my life. Now if i tell myself that every day maybe one day i will believe it!

I wish all of you the best, my heart goes you.

sincerly
~Angela~

ivm1 December 7, 2008 at 4:18 pm

need recommendation for MD in metro NYC area for scalp biopsy, etc. to diagnose sudden hair loss 18 months ago and continuing without any signs of diminishing; am still learning about all the issues and thank you all for candidly sharing your experiences so novices such as I can learn and take some action….

jzsnyc December 12, 2008 at 7:21 pm

I live in Manhattan too and here is what I have found throughout the years for Derms and Endocrinologists. Good luck and if you have any questions feel free to write back.
DERMS:
Dr. Roy Geronemous — great, nice, ran all the tests but couldnt do anything for me other than what i was already doing
Dr. Kassmir — icky worst man ever (i felt like a number)
Dr. Jerry Shapiro — wears a crappy toupee so its funny but he is Canadian and running a clinic at NYU right now for female hair loss, he is very knowledgeable and did way more tests that i had heard of…he even took super magnified photos of my follicles so we could see where the diffusion was etc… in the end again, i am doing what i should be so he wasn’t any help but i felt satisfied leaving him

I also went to Dr Walter Unger to inquire about a hair transplant…i opted not to do it but he was absolutely fabulous and his work is very impressive!

ENDOCRINOLOGISTS:
Dr. Kleinberg at NYU…very good and reputable, he is a bit odd but very thorough. He is a bit awkward with the emotions but he tries!
Dr. Ina Cholst — Kleinberg was my endo guy but i went to cholst because she is an obgyn who specializes in hormones so she was my 2nd opinion and sort of a way to check i wasn’t ruining my ability to procreate etc..

Danielle December 18, 2008 at 4:56 pm

Has anyone who’s used Olux foam experienced a throbbing intermitent pain in their scalp?

Jen January 23, 2009 at 11:44 pm

You’d think with all the medical technology that someone would figure out a cure for scarring alopecia!!! My story is very similar…I went on the pill when I was about 26 and about a year later, my hair slowly started to thin. I knew it was thinning, but I was in denial (because my hair is very curly, I chalked it up to that) and pretended it wasn’t serious. I went to a hairdresser who told me my hair was abnormally thin and asked if I was on the pill…I instantly went off the pill (and never went back on in 10 years) , but the hair loss, of course, didn’t stop. I went to my primary care doctor who ran blood work that came back normal. I went to a dermatologist who told me I was just going bald (all men of course). I felt hopeless and depressed wondering who on this earth would love me without hair (my head is so ugly without it!). I was scared to begin rogaine because I heard once you start you are on it for life and I feared one day they would stop making it and I’d be screwed, but I caved and began using it anyway, it was my last hope. I’ve been using it for 2-3 years and although it didn’t make my hair noticibaly grow back, I believe it did stop it from falling out. In the past 4 months, I went to a supposed hair specialist who did a scalp biopsy and told me , looking very confused, that I had scarring alopecia. He didn’t tell me anything else (I didn’t ask either), but he gave me cortizone shots and some shampoo and clobetasol topical solution, all of which did nothing for me. The doctor doesn’t seem to care (he’s no “House”) and he’s certainly not readingn up on the latest medical journals trying to find a cure. So, I stopped wasting my money. I decided that I woudl just occassionaly do internet searches for the condition and see if anything is working for anyone else and you know, I’m really glad I stumbled across this site because I don’t feel so alone anymore.

Sf(Washington State) February 1, 2009 at 1:03 pm

Well ladies, I too am expereincing hair loss and have been for at least 5 years. I am 31 and have never had super thick hair but I have had a lot more than I do now. I just recently stopped my BCP I have been on one form or another since I was 13. I have tried every pill over the years and have had some icky side effects. For the last several years I have been taking orthotricyclen lo. I also have been on spironolactone for several years due to cystic acne that came out of nowhere when I was in my mid twenties. I finally bit the bullet and stopped the pill and am expereincing more hair loss. I have been to Endocrinologists and dermotologists and have really gotten nowhere. I have heard the same things, try rogain, the pill helps hair loss, spironolactone helps hair loss, oh you don’t have male pattern hair loss, oh it’s tellegen effluvium, blah blah blah. I am so angry that no one seems to think it’s a big deal. Nobody in my family has thinning hair except my paternal grandmother who smoked, drank was a diabetic and was on tons of heart medication. I am healthy, eat well, excersize and what do I get hair loss ha! I was hoping that by stopping the pill I would see some relief but none yet. The only time that my hair actually stopped falling out was when I was on thyriod meds to try and shrink my nodule. Of course the Endo’s won’t prescribe it to me because my levels are in the “normal range” what a crock, maybe normal range isn’t MY range. Has anyone stopped the pill and had their hair grow back? I am on every vitamin Zinc, multi’s, vitamin D, B complex and I see an acupuncturist. I am going broke.
Good luck to everyone out there, I refuse to lose my frigin hair, it’s mine!
SF

Angela Styles February 10, 2009 at 10:34 am

Hi Andrea,
I understand your frustration. After major hair loss, I had to beg my doctor for a scalp biopsy. It came back scarring alopecia. Even then, the dermatologist acted as if it were “no big deal”. He told me I would have to live with it and there is nothing I can do. I was mortified. I didn’t give up. I found a different dermatologist. At least this doctor has taken an interest in trying to help me. I still can’t believe the attitude these doctors take with women’s hair loss.

melissa February 16, 2009 at 5:25 am

i am so happy to have found this site, its comforting to know that so many of us all round the globe are going through this traumatic experience. at least we’re aren’t alone!

ANDREA, i would like to say a huge congrats!!!! to you. it absolutely totally horrifically sucks to have hair loss and im glad you got diagnosed and are healing! five hairs is just terrific!`
im seeing a dematologist in a couple of weeks time and i hope she doesnt dismiss my prolem!

im only 18 and i have been shedding hair for about 5 months now. i have no family history of balding. well, at least none in their youth. IT IS REALLY SCARY. i think im almost depressed now.

the hair loss is getting worse these couple of days and i am really freaked. i can feel myself getting panicky even as i type. i obsessively take pictures of my hair but these few days i really cant bring myself to because the problem has worsened so dramatically. if this goes on i think i’d have a psycological disorder in addition to hair loss.

this is a great site, thanks andrea-for giving us that one thing we so need, hope.

i wish you the best of luck, please do update us!

Bees February 16, 2009 at 3:07 pm

Dear Mellisa

So sorry to hear about you. I am too totally consumed by my hair loss. I have been loosing my hair for 5 months now, been to I do not know how many doctors, had all the bloodtests, just to find a low ferritin, which I am now supplementing with iron. I am so sick of seeing doctors and their attitudes, I do have or should I say did have very thick curly hair, and have lost probably lost 40% in the pasat 5 months, I still look like I have a lot of hair to the average person, but I know my hair. When I wash my hair and lather it, it is like I am washing someone elses hair as there is so much less. All the doctors say you still have so much hair and it just aggravates me. Today I am shaking as there is always quite a bit of hair in the hair catcher in my bathtub after I was my hair but today, there was so much, much more, have not seen this amount in 5 months and now I am worrying it is getting worse, how much worse can it get. I am so depressed and have to try and carry on for my husband and 2 children but I just have not zest or drive in me. I never thought I would loose hair, it was the one good thing I had going for me. I walk around the house and see photos of me when I had my hair and I just want to cry. I am not sure what started my hair loss, I think it was a relaxer and a brazilian hair straightener that I had done in September. I just to do not know, but feel so down and drepressed, each time I see another hair, I feel like I am loosing a part of me that I will never get to experience again.

You are not alone in how you feel

Lille February 19, 2009 at 1:16 pm

Hi, i just thought I would give an update. I was diagnosed with LPP (Lichen Planopillaris) in August of last year. After reading andrea’s posts and finding out that she was in Austin too I made an appointment with Dr. Schaefer in late september. it was probably the best thing I have done for my hair loss.
He is so knowleadgeable about the condition, and he has really taken the time to educate himself about treatment options and courses of action, SO much better than my original dermatologist that coulndn’t even pronounce the name!
He basically put me on the same regimen as Andrea, minocyline 400 mg a day which I have been taken since then, clobetasol on the scalp at night and I am still taking all the supplements as before.
my hairloss has slowed down considerable and I even have some whispy new hair growth around the temples and top of my hair which is amazing to me!
I also got about 3 steroid shots each month until Dec. or so.
He mentioned that direct exposure to the sun makes the condition worse and aggravates the inflamation, so i have been wearing hats if I am going to be out in the sun for any lenght of time.
I even dyed my hair a month ago and I didn’t lose any hair at all!
I realize that I am probably not going to regain all the hair that I lost, but I feel hopefull now, which is a lot better than how I felt 5 months ago!

Kathy February 19, 2009 at 7:29 pm

Hi Girls,
I just came across this website and read all of your stories…all of which made me feel that I’m definitely do not alone anymore. I’m 26 years old and I’ve been experiencing signifiant hair loss for the past five months…keep in mind my hair is already baby fine and I really can not afford to be lose anymore. I cry almost everyday when I take a shower because I can see strands continuously falling out, I’m at the point where I don’t even want to wash my hair because I can’t stand to see my hair falling out and its making me depressed more and more each day…I truly feel helpless and hopeless. I went to the dermatologist a month ago and she told me that it might be telogen effluvium and she also ran some blood work. My bloodwork came out fine but she said my testosterone levels were just a little bit above normal (51) but she did not think it was anything serious because I was only six points above the norm of (45) and she thought it could have been slightly higher than normal due to my monthly cycle and she said I should call back in a month or so if there is no improvement. Well, it has been over a month now and there has been no improvement so I went back this afternoon and she performed a scalp biopsy. I should be getting my results back in 7-10 days…please pray for me cause I’ve had extremely thin hair my whole life and I can’t afford to lose anymore. I also made any appointment to go see the gynocologist because I have been told that hair loss can be due to a condition (Polycystic Ovarian Syndrome) maybe some of you girls can make an appointment and get tested for this because hair loss is definitely a symptom for PCOS. I really hope I find the underlying factor to my hair loss and I pray that you girls will also. Please keep me in your prayers and I will do the same for you.

Jill February 19, 2009 at 8:01 pm

Hi girls,

I am so glad to find this website. I am 34 years old and have been experiencing some “patchy” hair loss over the last several years, but it seems to have gotten worse in the last year or so ( after a miscarriage). I recently saw a dermatologist who did a scalp biopsy, and I was diagnosed with non-specific scarring alopecia although he feels that I likely had LPP. The hair specialist in Dallas, TX referred my back to my local physician for continued treatment. He has recommended steriod injections 1-2 times a month for as long as needed. He has me using Beta-Val (topical corticosteriod) daily and Olux-foam on the weekends only as he said this was a stronger medication. He also started my on Rogaine for men (5%) twice daily to regrow any hair where the follicles are not fully destroyed. I have noticed that many of your doctors also have recommended an oral antibiotic and I wonder if I should be on one as well-will speak to my doctor. Anyway, I have been feeling really depressed because there are so many uncertainties right now and I have felt really alone. Good to know that I am not the only one going through this.

Bees February 20, 2009 at 8:34 am

Dear Jill

Was the specialist your scalp biopsy was sent to Dr David Whiting at Baylor Hair institute in Texax, my derm here wants to do a scalp biopsy and send it to him to read. Just curious..

Bees

Jill February 20, 2009 at 3:44 pm

Dear Bees,

Yes, I did see Dr. David Whiting at Baylor Univ. He seemed very knowledgeable and took 2 scalp biopsies. Jill

Carol April 2, 2009 at 6:21 pm

I thought I would write and tell my experience. I was on yasmin for 2 1/2 years. Then noticed my hair falling out. Everytime I would shower/blow dry – I would lose a handfull of hair. I started to lose so much that I had to take a xanax everytime I washed and dried my hair. It kept falling out for about 3-4 months straight. I was seeing a derm who gave me scalp creams, oils, shampoos…After about 4 months, I would start to feel new growth and was so happy, but then in about 3 months, it would start all over again. I would also get a rash on my upper chest and arms. The doctors gave me prednisone for the rash and everytime the rash went away. This went on for over a year…losing my hair, getting a rash and seeing new hair growth only to experience it falling out again. I had a bx done on my scalp. It came back as possible mild dermatitis and an allergic reaction. I had a bx in my arm…it cam back as an allergic reaction. I went to an allergist, my PCP and other dermatologists. They did blood work and all said it could be stress. Granted by this time, I was wearing a wig because I lost about 95% of my hair!! At one point, I got the rash back and it woudn’t go away. (I covered it up with cover up to try to hide it) . One day at work….(I’m a life insurance underwrtier) I was reading someones medical records and it said this patient was losing hair due to an allergic reaction to a medication she was on. Well the only thing I was taking was yasmin. I stopped yasmin cold turkey the next day! That was in 9/08. Today – I have about 80% of my hair growth back … and I still feel a ton of new growth. My rash went away and I haven’t had it since. I am still wearing my wigs but I really don’t need to (I have 3 of the same ones – that look so much like my real hair that some of my friends and family members do not even know this happened). I just know that when I stop wearing them – I won’t want to put them back on and I’m not ready for that – becasue I know there is still more growth coming.( I’m going to AZ in 2 months and I figure when I come back then that’s when I won’t wear the wigs any more.). I read up on Yasmin and one of the RARE side effects is scalp hair loss and an allergic rash. (It can make your hair feel like it’s in the falling out stage.). Anyway – that’s my story. I hope this helps AND gives some people hope. Oh – I didn’t want to do the rogaine. I just use a biotin shampoo and take 5000 mg of biotin daily (both from gnc). I also take a daily vitamin and sometimes a zine.

Karen June 26, 2009 at 7:54 am

I am 31 and have been losing hair since I was 18. My hair is so thin that to be honest I have just given up and wear it in a ponytail permanently like a 6 year old. It is also very fine in texture so volumizing products just makes it look dirty and sticking together. My hair loss used to be a major preoccupation, it changed my entire identity, I used to LOVE drying my hair before a night out feeling all pretty, people used to comment on my lovely long hair. Now, I don’t even try to be glamourous anymore – because it’s kind of impossible, I don’t like going out anymore to places where other girls make an effort because no matter what I do, without my hair I just don’t feel dressed up, most often I cry before getting in the taxi for a night out after one minute too long in front of the mirror, and the night is ruined before it even started. I spent so much money and time and energy on treatments and products and nothing helped and in the end I decided to just give up as thinking about it all the time was just driving me crazy. Today is the first time in 3 years that I have googled hair loss, and found this site, and I am sitting here in tears. I saw probably 10 different doctors in the UK and South Africa about my hair loss. My scalp was red and itchy all the time (and to this day, it still is), people were commenting on the red colour, but because the hair loss was worst on my crown, they all just told me to accept that I would lose my hair due to genetics, and told me to use regaine. Once in South Africa I was even used as a guinee pig (I mean, mystery to be solved) at a dermatologists convention, they did a biopsy and found SCARRING on my scalp. They stood in a circle around me quizzing me, what did I do to cause the scarring? Did I dye my hair? Did I fry my scalp with hot impliments? They went away to discuss my case and called a few days later to say the only thing that could help me was Regaine. Today is the first time I have ever heard of scarring allopecia and I feel so angry at those doctors and so sad for myself. I could still have had some hair left if they had taken me seriously. But after receiving this diagnosis from a gathering of ALL the dermatologists in my region, what would I have gained by carrying on to see more and more of them? I feel so sad. I am living in Dubai now and will go see a dermatologist this week and ask him specifically about scarring allopecia and lichen planopilaris. But part of me is just tired of dealing with this. By scalp is super itchy and red again today. Hair loss is not 100 per day anymore because, well, I don’t have that many left. There is basically nothing left for me to do to hide my scalp, my hair is so thin that it is visible all the time now, and I am only 31. I am single and avoid going out to bars etc. because I just cannot dress the part without hair, especially in Dubai which is such a superficial appearance-conscious place. Here I am at home alone again on a Friday night. Thanks for listening to me vent.

Lille July 1, 2009 at 6:24 am

Karen,

I am so sorry that you are having to go thru this. It took me going thru a couple of dermatologists before I found a knolegeable one, so please keep trying.
Ask the new doctor for a scalp biopsy, they can tell pretty quickly and accurately if what you have is Lichen Planopilaris. I too had a very red, itchy scalp at first, I thought it was because it was summer and my scalp was dry, but it was the LPP.
Your hair follicles might not be permanently damaged, just dormant because of the inflammation (that’s what I keep telling myself anyway) I have read some medical journals where they state that is not always 100% permanent.
Good luck to you and I hope you find good treatment.

Lille

Lisa July 27, 2009 at 9:31 am

Hi, I’m a 46 yo female and my doctors are still trying to determine what I have; however, they are leaning towards Lichen Planopilaris (LPP). June ’08 is when I had my first biopsies and they came back with discoid lupus (DLE) and lichen planopilaris (LPP); however, I was told I had DLE and it was due to a medication (drug induced). Unfortuantely, I was never told about LPP. I stopped the medication and my scalp got better but never healed. My doctor didn’t do anything and said the clinic would just watch it. Watch what? Watch me get worse? Well, that is exactly what happened. Now that my doctor has left the teaching university clinic I have been reassigned to a new derm. This derm. has taken action and had me attend grandrounds. After that a biopsy request was made and I had 3 more done. Both came back the same as last years but leaning more towards LPP. I have now started taking vitamin c, e, d, biotin, B12, and zinc. My hair in the area where the DLE or LPP is permanently scarred due to lack of treatment. I still have long standing sores which I’m sure will also lead to permanent scarring. Thanks to the doctor that did nothing but thanks to the new doctor that has taken an initiative to help. LPP is chronic so it will never go away but it can go to sleep and not come back for many years. The CARF website has a video and there is a guy that said he hasn’t taken any medication for 4 years, which leads to believe the LPP has been sleeping for 4 years and will for more years. I am now trying to find confidence that I can be like the man that had his disease go to sleep. This is very hard to do because I see the bald area on my head and think this is what is giong to happen to me in the future. I’ve had TE three times in my life and cried because of it but looking back, it is nothing compared to LPP. At least my hair grew back whereas I don’t know if my hair will grow back with LPP. If only my problem was as easy as having TE. I am now on Plaquenil, Clobetesol, steroid injections and Rogaine. The doctors say antibiotics are not used for treatment of LPP; however, I keep reading that everone who has LPP is on some sort of antibiotic. Any comments from LPP suffers would be appreciated. Thank you for listening to me vent.

Carrie July 31, 2009 at 11:19 am

I was diagnosed just last week with Lichen Planopilaris. I am still in shock. I have had 2 second opinions since then, one of which was fairly local at Yale Dermatology – where they said it was female pattern and telogen effluvium, then an appt yesterday at NYU with Dr. Jerry Shapiro who confirmed it is Lichen Planopilaris. I am heartbroken. Like many of you I have always had terribly thick hair. Just 3 months ago I would throw it back in a ponytail and go for a run without thinking twice. Now it hurts to even pull the sides back. My scalp is red and sore even to touch. Dr. Shapiro is supposed to be the best so I got myself in to see him and he used techniques no other doctor had thus far. He looked at the surface of my scalp with a camera that magnified it 100x – disgusting. And he measured the # of hairs I had and the thickness of those hairs in the area I’ve been losing it. So sad… I am in tears every single day. My boyfriend has been a godsend to me though and is the only ray of light in this whole thing. His love and the tenderness he’s shown me has been the only thing getting me through this. Dr Shapiro even had my boyfriend hold my hair in place so he could take pictures of my scalp… I’ve had to let myself be so vulnerable in front of him, he even helps me put on my topicals now, its killing me to let him do it but he is ok with it and I just get choked up even thinking of it. Dr. Shapiro gave me about 40 shots of steriod in the scalp while at the appt (while my boyfriend held my hand) and gave me three different topicals to put on morning and night. Olux-E, some solution I had to get mixed with cetaphil cleanser, and rogaine. I only use the rogaine at night because it is so gummy – even the foam. I’m so scared to grow more facial hair (I have PCOS too, so he diagnosed me with female pattern hair loss also), yuck. Anyway, the olux is nasty too, it is greasy…can’t believe I’m going to have to put another topical on top of that in the AM… Anyway, I never thought I’d be here, doing this… Never. I always had so much hair… I feel like there isn’t an end in sight either because this string started last year and many of you are still battling this. My boyfriend talks about getting over this, it “burning itself out” then being drug free for awhile and having children. I am so discouraged because I don’t know when it will end.

Lisa August 2, 2009 at 12:13 pm

Carrie, I truely feel your pain. I was crying every day and still cry not knowing what the end result will be. I had an immunofluerescence test done and it came back negative for LPP and DLE but all the other biopsies indicated LPP and/or DLE. I’m guessing it’s because it was done in an area where the disease burned out. I go on Friday to have more scalp injections and hopefully they’ll do another biopsy, in an inflammed area, for the immunoflourence test. Did you have an immunoflourence test? Did you have a biopsy? These tests are used to help narrow the problem down to LPP. Is your scalp just red or do you get bumps that are really raised and inflammed? I get raised bumps that are inflammed that hurt to touch. Are you on any antibiotics like tetracycline or doxycycline? I hear most people with LPP are on some sort of antibiotic. The reason I ask is because my doctors say antibiotics are not used for treating LPP; however, the CARF website and many others say they are used for treating LPP. I can not believe there are studies for many diseases but nothing for LPP, or even some sort of successful treatment. I pray that we recover from this soon so our lives can get back to normal.

Ashley August 7, 2009 at 7:03 pm

Hello ladies,

I also just found out I have LPP. I live in Connecticut, close enough to get to Dr. Shapiro at NYU, but am wondering if it is worth it. When I called his office for an appt. I was told he doesn’t take any insurance and the initial consult was close to $900. Judging from what you all have said about him, he is very good, but that seems extravagantly expensive, and god knows I would do just about anything to reclaim my hair. I am currently on Clobetasol and was told to come in immediately for injections if I feel any lesions. So far things seem to be getting a little better–today I put my hair in a ponytail and it didn’t feel as tender or painful as it has. Like all of you, I just want to know when this is going to stop and if I am eventually going to have to get a wig. But no one can answer that one. I am so glad to have found some place to share my experience. It seems like every other kind of alopecia has a national foundation with lots of support and we have next to nothing.

Lisa August 8, 2009 at 11:10 am

Hi Carrie,
How are you doing? I had another round of injections yesterday and today I can already feel and see the difference. I wanted to previously let you know that Dr Jerry Shapiro is very well known. He is on the Board of Directors for the Cicatricial Alopecia Research Foundation (scarring alopecia). You are in good hands! Did he recommend you sign up with CARF? I strongly recommend you sign up. They will send you news letters regarding research and new treatments. I received one last month indicating that they discovered that uprocessed lipids set the stage of scarring alopecia. This means that either processed lipids are necessary for hair growth or unprocessed lipids are toxic. Researchers found that treating patients with drugs that enhance the lipid processing relieves symptoms and signs of disorder. I keep hoping that one day there will be treatment to stop the inflammation so that scarring will not occur. I can handle the treatment but can not handle the permanent hair loss. Should I end up having scarring and not enough hair to cover it, I will get a Virtuesse hairpiece. It is a hairpiece that you can attach to your own hair and is to cover only the affected thinning or bald area(s). You can swim, play sports etc with it. It is made with human hair to match your own hair. It can also be made with cyberhair. A full headpiece is also available. It looks so real that you can not even tell someone has it on. I’ve seen bald men and it looks like they have a real hairline. Just a little info to give you, and all the others, hope and options whould be needed. Good luck, and take care.

Lille August 13, 2009 at 11:22 am

Another update on my LPP:

Hi! I have written several posts on this site and I just wanted to give you all an update.
My hair loss started back up a couple of months ago, much worse than before. I have counted 280+ in the sink every time I wash my hair. which is not good!
I also had a lot of thick hair, so that has helped me in that I still have some on my head!
My doctor took me off the steroid shots and the anibiotics when the hair loss started to get bad again. I am now taking 200mg of Dapsone a day. he warned me that it could take 2-3 months for me to start seeing any improvement. well it has been 2 months and I have not seen anything positive yet, my hair is still falling out at an alarming rate.
I have to get blood work done every month to have my liver monitored because of this medication. I am giving it another month and then I am done with this medication. i would rather have a healthy liver than hair on my head.
I am not sure what the next course of action is, but I can tell you that after dealing with this for about a year and a half, I am about done with the drugs. I am becoming more and more at peace with the fact that I may have to wear a wig. I jsut dont know if I am willing to take more drugs that may or may not work. The antibiotics and steroid worked for a good 6 months and I was getting some growth back, so maybe I will go back on that. it just seems that it gets worse when the weather is hotter and there is more sunlight on my head. maybe i’ll start wearing a hat….

Anyway. I really appreciate all your stories and I hope that all of you dealing with this horrible disease will continue to post updates on this site. I will too.

Lisa August 13, 2009 at 8:58 pm

Hi Lille,
I’m sorry you are going thru such a tough time. Accepting the disease is the first step, and it sounds like you have just done it. No use fighting a battle you have no control over. Worrying doesn’t make your hair stop falling out our grow back, it just causes stress and makes the disease worse.

I have found two great books that keep me occupied so I don’t think of my hair issue. They are called “Becoming a Better You” by Joel Osteen and “The Mindbody Prescription for Healing the Body and Pain” by Dr John E Sarno. The book by Dr Sarno is about a 20 year history of patients that he convinced to think positive or about something else to avoid their ailments. Doing this actually caused the people not to think about their ailements and once they did there were no ailments. In addition to this, some of the ailments went away. It also worked for autoimmune disorders. He said that autoimmune disorders are triggered by your brain activating the disease. He said stress tells the brain what to do. I have read other Dr reports indicating the same on how autoimmune disorders are triggered and all have the same thinking. I for fact know that stress is a contributing factor to my hair loss and activation of scalp problem. About 10 weeks ago I was very ill with a virus that lead to an infection. I was in total bed rest for 1 week. I could n’t even get out of bed because I was so weak and in pain. Now, two months after that my scalp issue returns along with the hair loss. So, some of the hairloss is from my meds, stressful event from 2+ months ago and the scalp issue. In additon, the scalp issue is due to the stress. Joel Olsteen’s book helps you come at piece with yourself and accept what is happening in life because it’s all for a reason. It seems like nothing can come good out of loosing your hair, but one thing is if you do loose all of it and have to wear a headcovering you will never have a bad hair day and can have about any style you want. I know, easier said than done but somethimes you have no control over it so you have to make the best of it.

Most people with scarring alopecia that don’t have enough hair to cover scared areas or have thin hair with scalp showing will get a hair replacement piece and not wear a full head covering. I’m preparing for the worse, but hoping for the best, so I checked them out. One good line is Virtuesse. You will be amaized how great they are. You can not even tell it’s not the persons real hair in the replacement section. You can swim, bike and do just about any sport in it. Oh, you can also sleep in it. Some will get it bonded onto the head and others will use clips. We would not be good candidates because if the disease becomes active we have to be able to apply medication, which would be hard when bonded. Plus the bonding chemical is not good for the scalp. Please, check it out. It may give you a little conformt, at least it did me. It is custom made just for you, and the hair replacement facility will take pieces of your hair and send it in so they can find human hair to match it. Or, you can choose a nonhuman hair called cyberhair which lasts for years and doesn’t need maintenance like the human hair. The cyberhair is the most expenssive but looks wonderful. I think it looks better than the human hair. A sample of your hair will be sent in so they can make a cyberhair the same as your own hair. One place that offers these replacemnts is The National Hair Center. Check out their site, you have nothing to loose and only to gain so you can prepare for the worse, but still hope for the best.

My hairloss just started about 1 1/2 weeks ago. I’m currently loosing 100+ hairs a day. I used to have a lot of thick curly hair but due to numerous illnesses I had a lot of TE. The hair always grew back and most of the time it was more than I had but as time , chronic illness and medication my hair fall out more than the normal. Having one more disease was very hard to accept because I was already struggling from one. But, I finally came to piece with myself and accepted it. Now, it should only get better. If I loose my hair then I go to get a replacement piece and if I loose too much then I get a Virtuesse full head covering. Much better than having a serious illness. I got mine from drug induced lupus while being on Enbrel. I went thru a very hard time of dealing with sytemic lupus like symtoms. Thank God I didn’t get permanent systemic lupus. In addition, I got a sore on my head which multiplied. Biopsies were done last year two months in a row and both confirmed discoid lupus and lichen planopilaris and the doctors leaned more towards DLE than LPP. The lessions healed with scarring but just became inflammed again and I also have new spots. The new spots ‘big’ hard bumps that feel like someone hit me with a bat on the head. They were painfull due to the inflammation. I had steroid injections done before on lessions and they worked well so I had them done on these as well. They showed improvement but the doctors wanted to get aggressive so they put me on prednisone as of yesterday. The bumps are half the size and I no longer have pain. I also started plaquenil 3+ weeks ago, which I feel is working. My knees no longer hurt going up stairs. The sore joints is due to my long therapy of meds that are known to cause joint problems and many others not to mention. Unfortunately, I’m one of those that don’t have a choice but to take the meds otherwise I would not have a normal comfortable life. Believe me, the medicine does not make my life normal but it makes it comfortable so I can enjoy life. One nice thing about the plaquenil is it helped me run again. Yeah! I also had some ongoing plaques on my face, which I have never had until last year when all the drug induced lupus stuff was going on. In fact, my face was always clear. As of two days ago, they mysteriously went away. They looked like discoid lupus so I’m assuming that is what it was and the plaquenil helped it out. No, I never had a biopsy of them. So, I’m thinking the plaquenil has started working in some small degree. The topical steroids did nothing for me. If the steroid injections, prednisone and plaquenil do not make significant improvement then I’ll try cyclosporine. I hear this has worked well for many people. I read an atricle by the leading dermatologist who specializes in LPP. She had 3 patients that were on cyclosporine and in 3-5 months there was improvement resulting in the hairloss stopping and redness almost gone; however, there was still flaking. By 12 months all symptoms were gone and the diseases for all three patients were in remission. It sounds very promissing.
I have never heard about taking dapsone so I will have to ask my doctors. The CARF website doesn’t mention it either but it makes scense since was primarily used for leprosy which is dermatological related. You mentioned that you are will also be taking an antibiotic since they seem to show progress in the past. What type of anticiotic is it? Is it in the form of tetracycline? I’m on Keeflex since I can not take tetracycline with my other meds due to adverse drug reactions.
The CARF website has an article indicating that researchers have made a major breakthrough. They found that unprocessed lipids set the stage for developement of CA. Either processed lipids are necessary for hairgrowth or else unprocessed lipids are toxic. Researchers found that treating patients with drugs that enhance lipid processing relieved the symptoms and signs of the disorder. I’m going to ask my doctor to f/u with CARF to find out what drugs they are experimenting. This news is very encouraging. I’ll keep everone posted.

Lille, please do not give up. You have come too far. You have had hairgrowth before so why wouldn’t you have it again. Keep the faith since that’s all there is. I will continue to post and keep everyone updated. Take care of yourself, and try to find something to keep yourself occupied so your mind isn’t thinking about the disease.

ashley August 17, 2009 at 7:36 pm

hi everyone!

I am 21 and have been losing my hair since i was 14. I used toppix for a while but it makes a mess and makes my scalp itch. Im thinking about shaving my head and getting the virtuesse system. Does anyone know anything about this? Does it stay on for a long time? Is it expensive? Is it comfotable? Is it alot of maintance? Please help! Any info would be great!!!!!! Im running out of hair styles to cover up my baldness… i cant even put my hair in a pony tail now with out my scalp showing!

Lisa August 19, 2009 at 8:38 am

Hi Ashley,
I had a counsultation for a Virtuesse hair replacement piece. It is basically a piece of hair that is placed over a thinning or bald area. They can be bonded if you like; however, I wouldn’t recommend it since you need to get to areas to apply your topical medications when the LPP is active. Yes, you can sleep with the hair piece on but I think only when it’s bonded to the head. Clips can be used in place of the bonding. I’ve seen the clips and they are small so you wont be able to see them when applied properly. Plus, they are very secure. The cost for a hair replacement piece depends on the size of area you need covered. They start out at $900 and work their way up. A full head covering will start out around $3000. The replacement center will take several hairs from your head and send them into the lab so they can match human hair. It takes about 1 month to custom make the hair piece. When it’s done then the salon will give you a hair cut, clip on the new piece and then cut it to blend in with your own hair. They will also show you how to take it off and put it back on. In addition to this, they will show you how to blend in the hair piece with your own hair. Most places will try to push a maintenance contract which is very costly. I would not recommend the contract since you can learn to maintain the hair piece. However, you do need to go to the salon for your normal haircuts so your real hair doesn’t become longer than the hair piece. This process does not require a contract. Normally, they will try to sell 2 hair pieces so you have one when you take the other in for maintenance. Try not to let them push the extra one on you along with the contract. If you learn to do the maintenance yourself you will not need the additional hair piece. Plus, why not wear a cap while the hair piece is being maintained? There is a company called Hair Direct that sells the hair pieces via the internet. You have to order a kit that costs about $60. This kit has a step-by-step process on what to do so you can order the correct hair piece. It is half the price giong thru Hair Direct than thru National Hairl Centers, Hair Club etc. I’ve been told the hair pieces last about 10 years but then I’ve read stories about them lasting only a year. I’m still researching this. There is a non-human hair product called Cyberhair. This is the best product you can buy and is more costly than the human hair. It outlasts human hair by double the amount of years. You can not tell the difference between the human hair and Cyberhair. It also takes a month to make the hair piece with Cyberhair. The salon will take hair from your head and send it in to the lab. The lab then makes the Cyberhair to match your human hair and then makes the hair piece out of the Cyberhair. Since the hair piece is more than likely going to be a permanent thing, I recommend the Cyberhair since it will last longer and requires a lot less maintenance than human hair. I have not purchased a hair piece yet because I’m waiting for the LPP to burn out so I know what size of piece to get. Currently I”m using caps and a wig but will be in the past once the LPP burns out and I get the hair piece. So far I only need the small one that’s around $900. Virtuesse is not the only hair replacement product. The Hair Club has their own product as well. There are many other ones out there. I reommend checking out more than one replacement center because they all have their own pricing structure and may have a special. Oh, I would purchase the hair supply items thru Hair Direct since they are half the price. I hope this is useful. I highly recommend scheduling a counsultation so you can learn about the products. Also, it will make you feel better knowing that there are better alternatives than a hit heavy wig. I was crushed when I learned that I had LPP and would permanently loose my hair. The first thing that went through my mind was having to wear a hot heavy wig all my life; however, that changed when I learned about the hair replacement products. It made it easier for me to accept what I have and what will happen. Good luck, and happy hair searching!

Margaret August 29, 2009 at 12:26 pm

Glad I found this site. I had been diagnosed three years ago with LPP. I am a 54 year old grandma. I have a very active life at work, gospel singer and church leader…So you can imagine how important it is to try and cover the spots. Two years ago I had local injections, which helped a lot and I got back a lot of the hair. I think my mistake was using to much color shampoo,coloring my hair dark brown to cover the grey. Hair looked great. But for some reason, I had discontinued local injections, I recently was stressed out causing a deep, deep, deep depresion. Ofcourse, stress and depression bought back the hair loss. Then I went to another sylist to cut my hair a bit….she cut too much. She did not know how to deal with hair cuts associated to this condition. This made me much worse, I could see my thin crown, and two major bold spots on the right side of my head. I could not sleep, eat or be my self, axiety attacks kicked in. My internist, had a long chat with me, told me to get my self together if I wanted to improve, and to go back to my dermatologist which I did. Two weeks ago she started my local injection treatment and at hair loss is under control. By the way I have been using Dermatch for 3 years already…This really helps covering the spots, I use Folicure hair spray to hold down that area. Dermatch is part of me. I am down to washing my hair 2x a week, light blow dry and my hair has improved. After I was my hair, I try and avoid the mirror (I am sure we all do the same)..I apply Dermatch to my damp scalp. Takes 2 minutes, dry my hair slightly then make some rollers for a few minutes for volume. My hair is growing so that I can cover the side spots. My original light hair color and grey is coming out, but Dermatch helps alot. I hope I can color my hair again.
Does anyone know of a safe hair color?
Have faith my friends. My husband has been so supportive. I am almost out of the stress and depression stage. God has been at my side at all times, and I have faith that we will hear positive news. Lets start a prayer chain on this topic. God hears our needs. Hair loss is a big issue for us females. I will look into alternatives to keep a positive open mind and try and not let it bother me. By the way Bioteen is a great supplement, my doctor recommended it.
God bless you all and please keep the faith. Hope this helps.

Lille August 31, 2009 at 10:02 am

Lisa,

Thanks for all that information. I will definitely look for those books you suggested. I truly believe that you can use positive thinking to heal, mind over matter.
I was taking minocyline (sp?) 200 mg a day on top of the steroid shots.
More on the steroid shots: I had a shot every month since last September, the last one in April. Because of that, I ended up getting really bad stretchmarks on my abdomen! I went to my regular Dr. and she did some testing. she told me that a woman betweek the ages of 18 and 65 should have a cortisol level between 10-20, mine was under 1! she refered me to an endocrinologist that did additional testing. the levels of cortisol came back up to somewhat a normal level. She mentioned to me that i was very close to having my adrenal system shut down! Thank God that I am fine in that area, but needless to say I am extremely skeptical now of any new medications that may be prescribed to me.
I go back to my Derm. on the 9th of September and I know he is going to take me off the Dapsone and wants to try the plaquenil next. I just dont know.
Seems to me that all these drugs are affecting me in a negative way and I still keep losing my hair. I think I would rather be bald and healthy in every other way than have to deal with adverse reactions from all these drugs.
I will look into the hair replacements you mentioned also.

Thank you so much for your words of encouragement. Let me know how you are doing on those meds.

Sunny September 8, 2009 at 6:36 am

Where did you purchase a wig in Houston, TX. I am looking for a good place to go to. I do not have $2000.00 to spend on a wig. Thanks.

Sunny September 8, 2009 at 6:37 am

Oops, I forgot. Can women use the 5% rogaine – they say it is for men only?

Lille September 14, 2009 at 11:31 am

Margaret,

I have tried a natural haircolor before. I got it at Whole Foods. Its all natural ingredients. I can’t remember the name of the brand, but they only have 1 or 2 brands and they are both natural/plant based. It doens’t last as long as the regular hair color, but it covers the grey pretty well and it is a LOT easier on your scalp.

Amy October 13, 2009 at 6:29 am

I have been dealing with andro alopecia since 2005. I am 28 years old- almost 29 and I have had sucess in dealing with the horrible battle. My hair got really thin from my first shed and I always had a lot of hair so luckily i never had bald spots but if I pulled my hair straight back you could definitely see my scalp and how thin I had gotten. My andro alopecia was on-setted by getting off BCP which I had been on for about 10 years. I was put back on BCP (Zovia 1/50) and spiro (150mg) and w/in about 6-8 wks my shedding stopped. I did not barely shed a piece of hair for about 7 months and then it started again. At that time I had already decreased BCP to 1/35 so when the shed started again I got back on 1/50 and then again within 6-8 wks my hair stopped shedding. This has been going on since 2005- shedding and then remission. I have tried to get off all pills and it just sheds and sheds. I have tried to stay on spiro and get off BCP but it just sheds and sheds. My last shed has lasted about 8-9 mos b/c I tried to stay off BCP but have recently got back on them 3 wks ago and I’m already seeing the shedding decreasing. I still have a whole lot of hair despite the handfulls and handfulls and handfulls… I have lost in the past years when I have been in my shedding stage- sometimes 500+ in one day. I know that I am lucky. I eat really healthy and take care of my body to a certain degree :)- I still like to have fun and do drink alcohol and live it up a little bit with my friends:) I know that all of our stories are different and it sucks that I have to be on BCP and spiro but I still have a lot of gorgeous hair- not to the extent of what I had before I started thinning but to the average eye, they can’t tell what I have been going through. Yes, my hair is in all different lengths but I’m not complaining about that b/c I have hair. After every shed I do have regrowth, even during the shed there is regrowth. Please stay strong! Have faith in God and He will heal you- hand all problems over to Him b/c stress, depression- will just make it worse. There is hope… good luck all and I hope my story can be of help to someone out there.

Kaye October 13, 2009 at 11:01 pm

This website is very helpful. Thank you ladies for all of your comments.
I just returned from another derm visit. She was very rushed. I had injections done for the most part in the middle to front part of my hair. My shedding is diffuse, but she said she couldn’t give injections over all of my head, to much meds. Anyway, this is back story after stopping Femcon Fe BCP I noticed my hair was shedding a lot. It is the first tme I took BCP and it for 6 months to regulate my cycle and bleeding issues. I belive shedding started then but it is hard to pinpoint. After seeing several derms and docs I had a biopsy done earlier this year, scarring alopecia. I tried Olux, dermasmooth, flucoinide(sp), Loprox, shots but nothing has stopped the shedding.
Does anyone know a good derm in the DC/MD/VA area? I willing to travel, Dr. Sharpio at NYU sounds good but does the $900 include treatment? Does the doctor in Tx take insurance? How often can I get the injections my current derm says they only do it every 4 -6 week? I just had my second round but haven’t seen any results.
Thanks for listening, please excuse any grammatical errors, it is 3AM.

Lisa October 15, 2009 at 12:05 pm

Kaye,

Dr Shapiro is the best in the east coast. He communicates with other doctors that are part of CARF. CARF recently recently had a medical breakthru in treatment of scarring alopecia. Some scientific advisors are using the drug Actos for treatment of LPP. CARF will release the article to you if you contact them. Dr Shapiro will know about this as well.

It is expensive to see a leading specialist; however, if he helps the hairloss than the cost shouldn’t be a factor. If you do not want to see Dr Shapiro because of his fees, then I highly recommend you contact CARF for a referral.

I am taking plaquenil for my scarring alopecia, in addition to steroid injections.
So far this treatment has been helping. In addition, I eat a healthy diet & take numerous supplements. I eliminate sugar, white bread, pasta, rice, white potatoes, artificial sweetener, soda, coffee and most tea. I find that this has helped. I have also discovered that spicy food and anything with artificial sweetener prevents triggers. Eating healthy helps get your immune system back in track. I have also noticed that stress is a major trigger so I do various things to manage it.

I hope this is helpful. Good luck.

Kaye October 20, 2009 at 7:31 pm

Thanks Lisa, I’m glad you’re finding success in your treatment and wish you much continued success.

Cost is not so much the factor, as is wasting more money. Someone also mentioned this website http://www.hormonehelpny.com. For Dr. Redmond in NY. He is an endocrinologist. I’m going to research both and make a decision.

I’ve also started to change my diet. I have eliminated sugars and started taking supplements. Each week I try to incorporate a new healthier habit into my lifestyle. This week it is suppose to be exercise.
I had another round of corti shots. I plan to see another local derm and ask about using Rogaine. My hair grows in length but sheds like crazy. I just want the shedding to stop and to preserve what I have left. Trying to stay encouraged and be proactive.

Thanks again

Kaye

unwritten October 27, 2009 at 11:25 am

I too totally appreciate sharing your strength courage and hope. Every time I’ve mentioned it to a doctor I feel like I get the brush off. I did once go to a dermatologist to get checked out for hairloss/thinning (as well as psoriasis). He just looked at my scalp and determined it was definitely hereditary (really? you could probably look for more than 5 seconds). The older I get the less I trust doctors. I am grateful for forums/websites/communities like this!

God bless you!

Maeve March 29, 2010 at 8:48 pm

While it is good to read all of these stories, I have to say it kind of scares me more at the same time. I have been losing my hair for several months now (I honestly can’t remember when it might have started), though I first really thought about it in January and it is ridiculously thin. I am at college and have an appointment with a dermatologist at home in New Hampshire, but it seems like so many dermatologists overlook hair loss, so is it really even worth it to go?

Of course I will, because I am desperate to at least find out what is going on, as I cry about my hair all of the time, but does anyone have any advice about what I should ask of the dermatologist? Thank you all for your stories.

Colleen July 4, 2010 at 1:32 pm

Thank you Andrea for sharing your story. Maeve, I agree that these stories sometimes scare me too. I just had a scalp biopsy done a couple of weeks ago, and while I didn’t want to get it done, I’m glad I did now, so that at least I know what is going on. Good luck and I hope all goes well for you.

Emily July 14, 2010 at 9:31 am

It’s always nice to find forums like this so you know you’re not alone (Angela – my story is almost exactly like yours!). However, it seems as though people only comment a few times, then stop completely. It’d be nice to see updates from everyone so we can share ideas.

I was just diagnosed w/LPP (scalp biopsy), and have overall thinning. I’m trying hard to not let this consume all my time, energy, etc., but as I’m sure you all know, it’s hard to NOT think about it. My derm just put me on Doxycycline (antibiotic) and Clobetasol, and has suggested I start using Rogaine 5%. I am concerned about the Rogaine, as it causes lots of shedding in the first few months. Does anyone else have any thoughts on this?

Thank you so much!

Lisa July 17, 2010 at 11:11 pm

Hi Emily,

I am so sorry to hear you have LPP. It is very tough to treat.

The CARF scientists discovered last year that people with scarring alopecia have a defective gene that causes a malfunction in lipid metabolization. They have discovered that type II diabetes drugs helps metabolize the lipids. I have been on Actos (type II diabetes drug) since January and my hairloss stopped and it appears the LPP has burned out. I have tried the typical drugs used for scarring alopecia and none of them haulted the disease. Out of all the drugs I used to treat LPP the Actos has the least side effects. I highly recommend it.

There are some doctors in Isreal that accidently discovered that the blood thinner Lovenox cured lichen planus in one month and LPP in 4-6 months. Apprently thick blood prevents proper blood circulation which then causes the bad stuff to build up and set off the disease. I have talked to a guy that tried all the drugs for LPP and none of them worked so he then tried Lovenox and his LPP was clear in 4 months and hasn’t returned, which has been two years. Something you may want to mention to your doctor as well.

Best of luck.

Doxycycline has an anti-inflammatory effect so that’s why it’s being used for LPP. Usually a person is on it for a long time. Being on antibiotics for a long time can kill the good bacteria in your body thus leading to other complications like yeast buildup in the GI system. I highly recommend a strong probiotic to prevent this from hapenning. The topical steroids did not work for me but the injections worked well. The key is to catch the LPP early so it’s not difficult to reduce inflammation. The longer it lingers the harder it is to treat.

Emily July 21, 2010 at 6:27 pm

Lisa,
Thank you SO MUCH for your reply. I just read something similar to this (about the Actos) on another website–possibly YOU on another site?? :)

This gives me some hope, and I’m going to suggest it to my derm in August. I’ve been afraid to get my hopes up, and have basically accepted the fact that I’ll go bald regardless. However, this might actually work for me! I’d like to have the thickness back on top, but I’ll take what I can get! Thank God I had thick hair to begin with.

Again, thank you for your reply. I’ll try to check back in the next month or so to give an update on what I’m trying.

Emily

Jay September 25, 2010 at 5:21 am

Hi Ladies,

I have read all your comments about hair lost and I have enjoyed all of them.. I too have alopecia. My hair started thining about 10 years ago, and if I had know then about this illness I would have treated it alot sooner… BuI t I must say prayer has gotten me here today. I finally went to a Derm. and she has me on Olux E and Rogain .05. I beleive my hair is my glory and I have faith that I will regain a full head of hair. I have been using my products for 2 weeks and I have seen some hair grouth along with a (white scalp). But my scalp is ok.. I will pray for all of you that your hair is restored 100% because it is not Gods will for women to be bald… I will keep you updated.. I also take vitiman E and Biotin.. Many blessings…

Lynn November 23, 2010 at 6:43 pm

Hi Lisa,
I just started Actos about a month ago and I haven’t noticed any change. Like you, I’ve tried every treatment imaginable, and nothing has worked. How long did it take you to see a difference? What dose were you on?

I was also thinking about trying Nioxin, but unsure if it will make the LPP worse. Does anyone have any experience, good or bad?

prayful November 27, 2010 at 11:20 am

I was on birthcontrol for a month and noticed hair loss.
I tried jojoba oil and it does help alot, however for me the dermitis keeps coming back and the shedding.
I am now on my fifth doctor, please pray for me!

debra March 19, 2011 at 7:37 am

I’m so glad I found this site. When you are experiencing hair loss, you think that ONLY YOU have this condition. I’m an African American woman and my hair loss began about 4 years ago. Same as everyone else, went to derm, scalp biopsy, nothing he could do, you have scaring alopecia, get a nice wig, you will be okay. Someone else mentioned crying uncontrollably, so did I..as I write this I have tears now. I am completely bald in the crown area of my head and around the sides. I only have hair in a semi circle around the back of my head. Think more of a clown wig. (joke..) I wear wigs everyday all day and would not be caught dead without one. I’m not sure how this happened as I have not been on birth control pills in years (55 years old, hysterectomy years ago!). Tested for Lupus, came back negative. This disease has a way of testing your strength and destroying your self esteem. All I can say is to think the best of yourself. Hair does not make the woman, but it is what is inside of you that truly counts.Believe me, I know it is hard to deal with this. I’ve had find something to hold on to. I’m still the same person as I was with the great hair I had. I’m trying to learn to live life with this disease with some dignity.
Debra

carmen March 25, 2011 at 6:38 pm

Hi Y at admin..I was considering going on ortho tri cyclen to slow down my hair loss, granted it is from low estrogen caused by peri-menopause. Have you found it to slow your shedding/thinning?? Thanx for the feedback.

Nina April 22, 2011 at 10:12 pm

Thank you for this website. I have lupus and my hair has been falling out for the last month or so. It’s happened before bit this is much worse. Bald patch on the back of my head, really thin in front, and starting to get thin on one side. I am using Nioxin shampoo, taking Nioxin vitamins, and using ROGAINE. Hopefully, I will find out at my next doctor appointment in may if this is med related or lupus related. Thanks all for making me feel like I am not alone!

5favorites July 7, 2011 at 9:43 pm

Thank you so much for your blog! I am grateful for a wonderful derm that immediately scraped my scaly spot to test for fungal infection. 5 minutes or so later, he returned to say it wan’t fungal and we should biopsy. He biopsied both spots which are scaly quarter sized bald spots. I first noticed itching about 5 months ago and I had no idea of my hair loss in those spots until I was scolded by my hairdresser that I must be messing with my hair… I should get it checked. I had my husband look and take a photo. I was shocked to see two bald spots on the top of my head. I made an appt with my Internal Medicine office because I was hoping it was fungal and could be immediately treated. He gave me a solution of something to calm the scalp down and told me to return in 3 weeks. I returned. Nothing was better. He referred me to the Derm in the building for two dates later – which was today. No fungal infection, biopsied and now I wait for the results. I guess I am hoping to get answers soon! My follow up is in 2 weeks. Thanks for sharing your story. It really helped me to read it. Best of luck to you. It sounds like you have a healthy attitude.

5favorites July 7, 2011 at 9:44 pm

Sorry that email was so redundant and stupid sounding. Its 1:00 in the morning here and I am getting tired! LOL

Cynthia Theobald August 24, 2011 at 2:24 am

its been 2 years since I was first diagnosed with alopecia but my dermatologist just told me to wear a beanie to bed and keep my scalp warn at all times. He didn’t do a biopsy, didn’t do any blood tests and reassred me that he had 100% success rate. Well 2 years on and I am now wearing a wif and have brought down his success rate…..I have changed to a different dermatologist who did a scalp biopsy at my first appointment. I am awaiting the results. I can’t express how angry I will be if the best result is that I maintain what little hair I have left….have I just wasted the last 2 years…I know its only hair and that beauty is only skin deep, etc but my self esteem has taken such a battering over the last few years. I hope I will finally get a diagnosis and I am pleased that someone is finally taking me seriously. I am also seeing a heumatologist and haematologist now as this may have something to do with chronic inflammation……I have good days and bad one..days when I just want to cry and not afce anyone. Days when I look at photos froma few years ago and long to look like I used to. At least I don’t feel alone. My family have been amazing xx

Anna September 10, 2011 at 10:31 pm

I am so lucky to have stumbled onto this site. Can anyone recommend a dermatologist in the Orange County, CA or Los Angeles area? I appreciate any help that anyone can provide.

lisa September 22, 2011 at 6:48 pm

Anna,

Sorry this is late. Dr Richard Strick in Santa Monica is really good. He does research etc. Dr. Pearl Grimmes is a scientific advisor for CARF. She is also in Santa Monica. She is just down the road from UCL and near the City of Hope or somewhere near there. She is very busy. She is real close with Dr Shapiro out of NY whom is one of the world leading hair specialists. Good luck.

lisa September 22, 2011 at 7:00 pm

Lynn, I started Actos January 2010. It has kept me in balance up until about 1 1/2 motnhs ago it flared real bad. I’m guessing it is because I took a drug that interacted with Actos and decreased the effect. That is the only thing my Dr and I can come up with. I was very shocked that the doctor and pharmacy did not know of the drug interaction. I learned of it when I was reading up on all my meds I take. I’m like a walking pharmacy. CARF would know more about the effectiveness of the drug since they are doing research on it. I have read several reports involving men that were on it and it cleared it up; however, when I communicate with women they say it doesn’t work. I’ve only heard of one women that said it worked. It worked for me up until 1 1/2 months ago and I’m praying it stopped working because of the drug interaction. I may have to go on the tough gun Cyclosporine or Cell-Cept to slow down the inflammation so that way Actos can take care of the rest. My Dr is going to a conference this weekend and he said he will discuss my condition with Dr Price and get her advise on trying a short course of Cyclosporine or Cell-Cept. Have you tried either of them? What about prednisone? What about the injections? Injections seemed to work for me but only if I do them every month until the area is cleared. Last week I had about 30-40 injections and this week things are calm. Still hairloss but that’s okay as long as the inflammation has not damaged the follicle. I can handle a little hairloss and then growth later. Been there, done that many times with TE due to medical treatments. Take care.

Amiyra October 20, 2011 at 9:56 pm

Thank you for sharing! (although I am several years late). My story is similar though longer and is still going on with the same diagnosis and symptoms. I had a bad reaction to the steroids so I was taken off of them and the doctors sort of shrugged and let me go. Without health insurance they had less incentive to care. I really hope that your hair journey is successful/was successful.

Firehead October 26, 2011 at 8:44 am

Hi everyone,

I have had burning sore and pink tinged scalp for almost 6 years now. Like many of you I’ve been brushed off by doctors and depression was suggested to be the cause of my pink burning scalp and diffuse hairloss. I also get the burning in my eyebrows, itchy eyelashes, nose hair and pubic area. But they assumed it was a psychological problem even though I’ve lost half my head hair, noticable stubby lashes and general poor health feeling. My eyes look bare unless I put the makekup on heavy.

For the longest time I felt like I am a neurotic crazy woman. I had talked myself into this, I brought it on myself and I am crazy. I pulled away from everyone not feeling worthy because I must be crazy. I became paranoid and felt worthless – because I have the mental power to bald myself.

About a year ago I stumbled across the Actos thread and how it helps lipids and LLP. I had a biopsy and NO diagnosis other then alopecia. I also have very oily skin, face, back, chest and upper arms. Something was not right. I decided to experiment with another diabetic drug called metformin. Although I am not diabetic it appeard something was off hormonally. Taking only 250mg a day – in 10 days my scalp pain and redness subsided. I was for the first time in 6 years out of chronic scalp pain~ I had tried in the past steroid shots, Yasmin, Steroid pack(medrol)? Natural thyroid replacement, multiple vitamins, steroid shampoo and nothing worked. The Metformin absolutely does the trick.

I also have new symptoms of extremely dry eyes and mouth – my hands and feet turn blue – and I have multiple muscle cramps, fatique, hairloss, chronic pain etc. I do feel I have an autoimmune issue but I will not see anymore doctors because I am ashamed and embarrased to see anymore. They already think I am nuts and they would not support the metformin.

It worked for me when nothing else did it was the miracle cure. My scalp pain was virtually gone – but the hair did not improve. HOwever i’ll take pain free days anytime!!!

I hope this helps someone.

Firehead October 26, 2011 at 8:47 am

p.s. I forgot to add that the met seemed to calm down the scalp oils therefore I wonder if it has some of the same affects of Actos in controling the lipid issue.

How of curiosity, how many of you diagnosed with LLP or even undiagnosed with the pain and hairloss have extra oil problems?

Sandy November 14, 2011 at 6:17 pm

I am so lucky to have found this website. It really means a lot when you know you are not alone to fight the battle, one you don’t even know who the enemy is! I am 32 years old and I believe my hair loss problem has already been on for maybe 5 or 6 years. I had normal amount of hair and never thought I would have hair loss problem. So when it first started I didn’t pay attention to it until recently. I have seen a few dermatologists and their diagnosis were all Seborrheic Dermatitis. I am using Loprox shampoo (ciclopirox 1%) and Luxiq (Betamethasone valerate foam 0.12%). The pain seems to be less but not the shedding. I lose about 50 hair at least when brushing my hair after shower and lose probably another 10 to 20 during shower, and who knows how much hair I lose during the day… I am really frustrated and scared. Can anyone suggest a good doctor in Indiana or Chicago? It looks like even if I get a doctor to do a scalp autopsy, if they aren’t knowledgeable in this area they won’t know what to do anyways. And a lot of the treatment sounds scary too… Please give me some help. Shall I continue using the two drugs? How can I find a good doctor that cares???

Olivia December 15, 2011 at 2:51 pm

I’m so happy I came across this blog. I was diagnosed with Scarring Alopecia about 5 years ago. I was senior in high school, when my hair dresser noticed I had a bald spot in the middle of my head. I didn’t worry abot too much and figure maybe my braids were pulled to tight. Over the months, I noticed my hair shedding everytime I combed. Eventually, the bald spot grew bigger.

I visited a dermatologist and they diagnosed me with Scarring Alopecia after doing a biospy. I cried the whole time. The doctor was still unable to tell me what caused it. I was prescribed minoxidil for my hair and recieved injections in my hair to help my surrounding hair grow back. Well it didn’t work much for me. However, after 5 years my scarring alopecia has come to the “burn out phase” and the hair loss has stopped.

But, I’m still left with a big bald spot. I use to have very long thick hair and I would always wear it loose. I still stuggle with my hair loss but I haven’t let it affect my self-esteem. I miss having my thick long hair though and now I just wear weaves because my bald spot is too big at this point. I never knew the damage that chemicals & relaxers can cause to the scalp.

Soo at this point I’m trying to raise awarness for hair loss so there can be more research developed and maybe a cure for it as well.

Jennifer December 19, 2011 at 8:15 pm

I too, am happy to find this blog. My 16 year old daughter has the same issue as Sandy above….and was diagnosed with Seborrheic Dermatitis over a month ago. Has anyone tried Derm-Essentials for Seborrheic Dermatitis? I ordered it to see if it will help. She is using a strong prescription shampoo and steroid that has a horrible list of side effects (that I hate putting on her head). It has calmed her scalp down but her once beautiful, thick, waist length, auburn hair is over 50% thinned. She loses handfuls a day and before we were able to see a dermatologist (getting the appointment took awhile) she was devastated, finding clumps of hair everywhere. I’ve read about cocoanut oil – any luck with anyone regarding this treatment? Mostly I just want to know if her hair will return. I don’t see any new growth yet. Any advice would be awesome – thank you all.

Marilynn February 20, 2012 at 8:26 pm

If you reside in DC or the Maryland & Virginia suburfs, see Dr. Bruce Glassman at Capital Dermatology in Alexandria, Virginia. The female, Dr. Simone Mc Kitty in the same practice is not very effective. Olux-e, Rogaine (men’s rogaine @5%, and biotin) seems to have stopped the chronic hair loss I was prescribed the Olux-e 2 weeks ago and the amount of hairs coming out is minimal compared to before & the scalp is less itchy. I lost about 90% of my hair which isn’t even 1/2 inch in length the entire head. I don’t even have enough hair to attach a weave to. I hate the thought of wearing a wig. Good luck to everyone expericing this problem, Mari

peggy March 14, 2012 at 1:33 pm

Can anyone recommend a dermatologist in the brooklyn, NY area? I appreciate any help that anyone can provide

Barbara May 8, 2012 at 9:09 pm

I am do glad its woman just like me whom is suffering the same things I’m suffering from….

Suzett June 4, 2012 at 6:23 am

I, too, have scarring alopecia, and yes, earlier dermatologists more or less dismissed the problem and I lost even more hair in the meantime. Those who have posted before me seem to share the same agony. The last dermatologist last summer was the first to care enough to perform a biopsy; thus I finally got my scalp diagnosis of scarring alopecia. I had thick hair as I was growing up… so much that hairdressers used thinning scissors to manage my hair better. What I wouldn’t give to have that identical problem now! My prescription is the Olux foam, and yes, it is expensive even with medical insurance co-pay. I started out with Olux-E, but I didn’t like it since I’m still working (I’m a senior now.) and my hair was so oily all of the time, so now I use Olux without the emollient. I don’t think the latter works as well for my scalp appearance, however. I worry that I overly use this steriod, and sometimes my scalp gets really sensitive to touch. To my knowledge, I have not regained any hair growth, or it’s been very minimal. The Olux-E actually made my scalp look and feel the best very quickly, so it’s too bad I cannot keep using it and wear a headscarf to cover up the messy hair. Some day I picture myself buying a nice wig and maybe shaving off what hair remains on my scalp. It seems it would be easier to treat with the foam that way. Now, I think my eyebrows are thinning, also, and I don’t know how to remedy that problem. Yes, there are worst conditions than hair loss! What seemed to have triggered my hair loss is a Prednisone shot that an emergency clinic doctor gave me on a Sunday. Previously, I had developed a severe case of poison ivy, and this is the steroid that the doctor gave me afterwards to cure the poison ivy allergy. Since the Prednisone, I gained lots of auto-immune diseases, and afterwards, another doctor said I should have received a topical steroid instead of a shot. I have learned a lot, but there’s no going back now. Instead, I am thankful to be alive still!

Patrice June 23, 2012 at 5:25 am

I was diagnosed with scarring alopecia some 10 years ago. Not a day goes by that I’m not consumed by thoughts of my hair. Thankfully, I live in Atlanta, and my dermatologists have been very proactive in saving my hair. I’ve used a little bit of everything over the years. But the one thing I found to be most true is that I had to be willing to learn how to do my own hair at home. I’m constantly doing some kinda of oil treatment. Additionally, I grew my relaxer out soon after being diagnosed. At the time, I was told it would help. Maybe it did…maybe I would be bald by now if I hadn’t. But I’m not going to give up on my hair. Thanks for this website. My hairstylist (who I see once a month), often makes me feel like I’m the only person in the world that is experiencing this.

Angie July 15, 2012 at 4:53 pm

I was diagnosed with scarring alopecia after watching my thick mane slowly turn into a thin head. I am scared that I will not have hair by the time I am 60. I am in Atlanta and my doctor now gives me shots every 8 weeks and I do the liquid regiment that everyone else has mentioned. I am leaning towards adding a few pieces of weave in my hair just to give the appearance of thickness. Can someone share with me whether or not that has hurt the hair growth? Also, I have read all of the threads but it appears that no one has had any significant hair growth. I am wrong, please let me know. I am looking for any signs of hope.

Lisa August 22, 2012 at 3:09 pm

I am a 33 year old woman and I was diagnosed with LPP (lichen planopilaris) last December after about 6 months of severe hair shedding and an itchy scalp. My first doctor told me that it was stress and since I had been under a lot of pressure at work I believed her. Then I found a pink spot on my scalp where there was a bald spot. I work with animals so I thought maybe I had ringworm so I went another doctor. He cultured my scalp and prescribed a ketoconazole shampoo and a steriod shampoo. They did not work and my culture came back negative. He told me that he would like me to consult with a dermatologist since could not be convinced it was only stress-induced hair loss. The first dermatologist barely looked at my scalp and told me that it was not ringworm (duh) and that she has never seen any woman go completely bald from whatever was my condition and that scalp biopsies never yield good results. She recommended I get some rogaine and some anti-anxiety drugs. I cried right there in her office and all the way home. My primary care doc prescribed Paxil for anxiety. My hair continued it’s mass exodus from my scalp and I felt helpless. I cried everyday. I finally decided to consult another dermatologist who told me that I had the worst scalp pathology she had ever seen. She immediately ordered more tests and suggested we biopsy my scalp. She held my hand and told me that she would get to the bottom of my problem no matter what it took. She called me from her home on a friday night when she got my results-LPP. She said that it is an immune mediated disease in which lymphocytes are attacking my hair for no known reason. She has done a tremendous amount of research on my condition and shared all sorts of articles with me on the subject. She prescribed high doses of prednisone and olux foam to hopefully put my LPP into remission. We also tried steriod injections into the scalp and laser therapy-neither worked. The pred worked beautifully but caused terrible side effects. I am now off the pred and my hair is falling out just as bad as before. I have multiple bald spots and you can see my scalp all over. My dermatologist said that the next thing we try is an anti-organ rejection drug (the kind heart/liver/kidney transplant patients take). I think I might try it before I give up entirely and shave my head and purchase a wig. My 4 year old daughter keeps trying to cover my bald spots and tells me she misses my hair. This whole ordeal has been a nightmare that I can’t seem to wake up from. I am lucky to be surrounded by people who are supportive of me though. I am trying to come to terms with the fact that I will probably be completely bald by the time I am 35 I just don’t know how. I was hoping that someone might have insight that will help me cope.

mandie September 8, 2012 at 6:37 pm

I am a 27 yr old mother of 2, who also has PCOS( polycyctic ovarian syndrom) I see an endocrynologist and am trying to lose weight and get myself back together. Despite struggling with PCOS and weight issues for years i have NEVER experienced hair loss…..til these past few months:(
I have(had) long think light brown hair down to my mid butt that wond me many votes and best hair in highschool……….I used to have th ehairdressers razor thin it out b/c it was TOO thick…….its less that half of what it used to be now. …..Its been pretty easy to hide so far b/c I usually wear it up (due to kids and running a restaurant) but i cry everyday over the amount I am losing and the way my hair feels now. I go in wed. to meet with my endo over my lab results I had 3 weeks ago….He thinks somethings out of wack and wants to most liekly put me on SPIRO. I am very nervous about this drug in general and nervous it wont work for me……I have not tried anything other than washing my hair less( and brushing less) b/c everytime I do it terrible and I die inside……….I am at the point in my life where I have NO self confidence due to this and my weight and a few other factors. I have 2 beautiful boys and a loving hubby who need me and know I am struggling and I really dont want them to see me like this. My hair has ALWAYS been my pride and joy……even when I was skinny and beautiful……and now it too is failing me. I have even looked into wigs…….for the future. In my opinion at the rate Im going by 30 ill need one:(
As happy I am to have found all of you, I am equally as sad that so many wonderful women have to experience this tragic pain……over our hair. My best friend just told me that My hair doesnt make me who I am…..and Ill be me no matter what……I know but come on! really!! I sobbed in her arms for a half an hour after that. So I guess in a few more days Ill figure out the test resluts and go from there…..praying for an answer with a fix/cure

David November 15, 2012 at 11:52 pm

I’m a 53 year old male who has been blessed with a full head of hair, so I know I’ll get no sympathy from my bald friends, so here goes:

OK, so I’m not a girl, but I was just 3 months ago diagnosed with LPP. I’ve had symptoms for about 2 years of slight overall itching of scalp, and scabbing/scaling at a small spot at the crown at the back of my scalp where hair goes in different directions. I picked at it cause it was weirdly addictive behavior. Little pieces of dried scalp broke off that I just attributed to a dry skin that is always worse in the winter, so never thought it was anything serious. When the condition never seemed to go away, I FINALLY went to a dermatologist who had a couple years ago treated a pre-cancerous condition very successfully. Unlike many of the stories above, this doctor apparently knew his stuff, because after briefly examining it, he said that he would need to biopsy it to make a diagnosis. The following week I was given my LPP diagnosis along with a treatment regimen of twice-a-day topical applications of Clobex (clobetasol propionate) spray. He said he sees 1 or 2 cases of LPP a year, so it’s quite rare. Though he did say this was a tough condition to treat, I seem to remember him saying that the hair loss was temporary. So, you can imagine my reaction when just two days ago on my followup visit, he told me not to waste the steroid spray on the bald spot, as those hairs would not regrow. “Come again?!”, was my head snapping response. I had been living under the comforting but false illusion that this growing bald spot would eventually go away. I just minutes ago made a painful but truthful assessment of my current status in the mirror by taking several photos with my iPhone. The truth really hurts sometimes. It is especially heartbreaking because I could have started treatment at least a year sooner had I known of such a disease. Ok, so the bald spot is “only” about the size of a dime, but how big will it grow? Who knows. I’m a little perplexed as to why he seemed to think upon re-examing me that the condition hadn’t gotten any worse, when it seems pretty clear to me that the spot has gotten larger. I will be getting a second appointment, and also looking to see a specialist in LPP. Any suggestions?

Renata January 10, 2013 at 7:32 pm

I have just found this website, I have been diagnosed with fibrosic alopecia on December 19. I have been researching and seeking many different opinions from various doctors. None have given any optimistic cure, therefore I feel I want to opt out of taking any medications that might hinder other areas of my auto immune.
Instead of working on trying to grow my hair back, which according to studies will not happen I am focused on strengthening my auto immune, so that it can’t fight off any future disease that I might be vulnerable to.
I am also focused on working on my emotional well being, as we know loosing our hair as women is very devasting .
Nonetheless, as I continue to comply my personal research , I noticed that all the studies do not implicate a history of the people that their are studying. It would be interesting to see a study done where a historical data of each subject is collected, and the secret to the cure might not just be genetics, could be encironmenal, emotional, cognitive etc etc there must be a common link to why some of us loose our hair and others don’t.
As I move forward into the hair loss acceptance , I am trying hard to focus on the what’s and the how’s rather than why me.

Chrissy May 9, 2013 at 10:44 am

Hi, ive been reading your posts and im so glad that there is a place where ppl understand what we r going through. Does anyone know of a good dr. That treats LPP in Houston

Sarah August 7, 2013 at 4:31 pm

Hi everybody :)

Diagnosed with LPP at 25 and have family history of thin hair and female pattern baldness. So as you can imagine losing what little I have is devastating.My derm at the time said it could have been dormant for a long time just waiting for a trigger. Which I do think was stress. I also have hypothyiodism which I would recommend everyone get checked for. Very common in Women and genetic.

I am now 27 and started noticing more loss and more shedding. Can see more scalp :(

Started out with Olux -e and 200MG of hydroxycholroquine and steroid for any redness or itchiness I get.

Now just on hydroxy and steroid.

A about 6 months ago I noticed less shedding and ichness and derm said LPP burned out. Of course they are not sure if it is and I am still losing hair.

Does any one have a good recommendation for shampoo and conditioner?

What about vitamins? Trying to find as many ways to combat this as to not give up hope.

Like everyone posted here I am glad I found this forum because I don’t know anyone around me that has this disease. So it is hard for the people around me to relate.

Any advice would be great

Cheers!
-Sarah

Lana December 6, 2013 at 9:32 am

I appreciate what everyone is going through. Hair loss as a woman is horrible, life encompassing and costly. But with respect to all of you, I know you are all barking up the wrong tree. As someone suffering with this for years now, dermatology is NOT the answer. It’s like putting ice on your foot, when there is a nail under your heal! Western medicine treats symptoms and not people. That’s why it always comes back again. There is something off in the body and it’s coming out in the form of hair loss. Whether it’s psoriasis or scarring alopecia.

I finally got answers at The American Center for Biological Medicine in Arizona. ACBM practices biological medicine and focusses on treating the individual, holistically, naturally. The problem is everyone’s body is different. Therefore, all these creams, steroids and drugs treat us like we’re all the same. Only when you find the cause of the inflammation, can you bring the body back into balance. Find a great naturopath, whether it’s here or somewhere else. Inflammation in any form is a disturbance. Your body is screaming for help!

In my case, my autoimmune system has been attacking me. Reason: environmental toxicity, emotional disturbances and dysbiosis or inflammation in the gut. I had literally no good bacteria and a plethora of bad bacteria. Not one medical doctor did a stool test on me! I had years of gastroenterological problems and not one doctor thought that possibly I had a food allergy. I have a severe one to dairy. I only found this out through alternative testing. All the western tests said I was perfect, except for a high ANA count which they said was, “negligible.” ANA, means your immune system is over reacting. And not one of these dummies put two and two together!

Please know, I do not hate all doctors, but dermatologists treat symptoms and with hair loss, quite frankly, their track record sucks. I wish I had known this four years ago. Rather than wasting my money on steroids, anti-biotics and creams that left my scalp atrophied. I guess for some people, it works. But it is a temporary fix in most cases.

Finally, after over 20 years of being on anti-inflammatory meds for IBD and being told I would have it the rest of my life, I am symptom free for the first time. The gut is connected to the skin!!! I changed my diet. Eliminated wheat, gluten, dairy, alcohol and processed foods. I’m on an anti-inflammatory diet: fish, organic meats, fruits, veggies, nuts, brown rice, etc. I am not symptom free from the scarring, but my head has gone from red and inflamed to mildly pink. There are a lot of other things I’m doing, but it’s already too much in this one email. I wish you all luck. Be your own doctor. Find what’s going on emotionally in your life as well. Get therapy. Find out what you’re angry about, scared of, haven’t dealt with. Healing is mind, body and spirit.

Namaste

Carrie January 13, 2014 at 7:17 pm

Hi Lana. Can you tell if your hair loss has stopped?

andrea February 18, 2014 at 7:18 am

Andrea,

I am in Dallas, and would love to find a good dermatologist to help. Who did you see in Austin? I am willing to drive anywhere…….

Adriana May 5, 2014 at 9:30 am

Hello, I would like to know if anyone has a recommendation for a good acunpucturist in New York City that treats lichen planopilaris. In the past year I have lost a considerable amount of hair, and I have been trying Olux, Rogaine, Dycoclyclyne without success.

Also, if you have a success story in New York and a recommendation for a great doctor, I would appreciate it.

Thank you so much!
Best regards,
Adriana

Jazabelle May 7, 2014 at 7:07 pm

Go see Dr. Jerry Shapiro at NYU Hospital in NYC, his specialty is hair loss. He is currently treating my lichen planopilaris

Rosie May 19, 2014 at 12:34 pm

Hi ladies,
Thank you so much for sharing your stories. I am at the beginning of my hair-loss battle and would appreciate any advice you all might have as next week will be my first visit to a dermatologist. I am so saddened by this, and am imagining the worst case scenario.

I am 29 years old and grew up with thick hair. In my early twenties my hair began to thin out and I attributed it to changes in hormones. In the last year my hair has thinned rapidly and just this last week I started feeling a very mild burning sensation at the hairline on my forehead. I noticed a nickel sized area of baldness or stubby broken hairs. Of course, I panicked, and made an appointment with a dermatologist for next week.

I an anxious to visit this dermatologist, but was also hoping to get pregnant this summer and do not want to take steroids/rogaine. I am wondering if this is stressed related, hormonal or product related. I have been using an over-the-counter retinol face cream and have been taking prenatal vitamins for the last two months.

Knowing what many of you know now, after years of doctors visits, what do you recommend I do from my end? I know I might be getting a head of myself even before seeing a Dr. but I can’t think about much else.

Thanks!
Rosie

Kasey June 20, 2014 at 6:18 pm

Rosie
How did your appointment go? I am also 29 and was hoping to be pregnant by now but that all came to a crashing hault when I was diagnosed with Lichen Planopilaris and I was put in steroids and plaquenil to treat it.

Tabi July 15, 2014 at 1:35 pm

My advice is purely cosmetic but I have found that using dry shampoo after a shower and before going out helps the appearance of my hair greatly. It takes some care to ensure you don’t have white powdery spots on your scalp or hair, but it reduces the shiny scalp appearance a lot. The more hair I lose, the more limp and oily it appears, so the dry shampoo helps that a lot. It also makes my hair seem thicker. I do have blonde hair so the white powder spray is less obvious than on dark hair. I use “suave dry shampoo” from Wal-Mart for $3 a can. Some people make their own with baby powder or clay powder. I also use “caboki hair fibers” but they are pricey when using a lot so I use dry shampoo first then add in some fibers.

Sorry I don’t have treatment advice. But cosmetics are an important factor when you are feeling like less than a women because of hair loss. At least that is how I feel sometime. Good luck ladies.

Gloria July 18, 2014 at 7:37 am

Hello ladies,
I would like to thank you all for sharing your stories. With everything I am reading here although very sad, it is comforting to know I am not the only person dealing with hair loss/thinning. I sometimes feel I am the only one and always ask why this had to happen to me. I feel like no one around me understands and they never will because they don’t deal with what I am on a daily basis. At age 19 I made a decision that I regret and wonder to this day if it had anything to do with my hair loss. Being young and naïve, I decided I wanted to get the depo shot so that I wouldn’t have to deal with my period for a few months, in which the results were exactly the opposite, I ended up having my period for almost 3 months straight, I gained wait drastically, and shortly after started noticing hair loss. I never researched the side effects nor asked questions until it was too late. Now I am 34 and my hair is so thin around the crown area, that I can no longer style my hair and the only comfort for me is to put it up in a ponytail every single day; I also use a scalp shadow to make it look like I have full hair. I can never wear my hair down without having people stare at me or ask questions. I can’t even go to a hair salon anymore as it is always painful having to tell my story to the hair stylist every time someone new is cutting my hair and hearing them tell me to try Rogain, Biotin, Nioxin, etc…all of which I have tried. Unfortunately this is an everyday battle and very depressing at times. I too have gone to several doctors for help to only find out that they were not interested in helping me, but to just get paid. It was and still is discouraging to not have found the right doctor that truly cares. I am glad that I came across this website, that may shed some new light and I will look into other possibilities on the cause of my issue. I can only hope that one day we can all find a cure to our hair loss, either way, I am grateful to have good health and wish the same for all of you.

Mycurlyhair November 13, 2014 at 11:59 am

Hi Lana! I would love to get in touch with you and hope you see this! I too have LPP and think it is environment. Would like to know where you are now w/ your LPP.

Carolina January 4, 2015 at 8:16 am

Hi, I am wondering….If you are losing hair all over your head for two years….is there any chance that it can be scarring alopecia? I mean everywhere in the head from day 1 (nape hair a little bit less bad). Oily hair. Some acne on the head. Say 4 “acne” at the time on average. I know there are other possible causes but I ruled them out. And the question (again) is CAN YOU HAVE SCARRING ALOPECIA EVEN IF IT IS THINNING HAIR FROM ALL OF YOUR HEAD IN A DIFFUSE WAY?. Because it seems that you need it to be either patchy or diffuse but not the whole head. Am I correct. Please reply me. I want to know if I should get the biopsy.

sarah January 4, 2015 at 2:59 pm

I was diagnosed with LPP 1st November 2014 after a scalp biopsy. I’d had an itchy red scalp for well over 10 years but each dermo I’d seen previously just wanted to prescribe me iron and never commented on my scalp.

Finally I had a diagnosis, I have some hairloss already and early scaring.

I suspected LPP since the summer this year after I went to see a transplant surgeon and he mentioned it looked like LPP and that he could not do a transplant if this was the case.

So I’d spent a significant amount of time researching the condition. I already had coeliac disease (another autoimmune condition)

Following much research it seemed following an anti inflammatory diet was the best and only way forward. AS the autoimmune disorder is likely linked to a leaky gut.

I have been doing this for 8 weeks now and literally within the first week my itching stopped completely and within two weeks my rash had almost gone. Now finally gone completely !!!

I can’t even describe what it feels like to have itched like crazy day and night for 10 years and now nothing !!! during the past eight weeks I’ve experimented with the odd thing I should not eat and my itching comes back but goes away again within 24 hours. I’ve now completely refined my diet and have no more mishaps. I have to be careful with what supplements I take as well as some have maize starch or potato starch all of which can be inflammatory for some people.

I’m not going to pretend its easy, because it is not. And there was a massive part of me that actually did not want this to work so that I could say I’d tried and then still eat loads of chocolate and drink coffee. But after 8 weeks I’m used to my diet and don’t think about the things I can no longer have and have become much more creative with my recipes.

An anti inflammatory diet is not for the faint hearted !! It’s tough !!But I did not want to take the medication etc and still have the cause there and a risk of side effects.

From my research, it will take about two years for any new hair growth to occur (and that’s only in the areas which have not scarred already). But there is hope where there was none before.

I hope you find this helpful. Good Luck everybody

Sarah

Judy January 5, 2015 at 11:59 am

I have been fighting this hair loss for several years and I seem to get the run around. I have tried Rogain, 10,000 mcg Biotin, Nioxin, perscription creams, oils etc and nothing works. I just asked my Dr.tosend me to another dermatologist to get a biopsy that no Dr has recommended. My scalp is red and itching and has a few pustules. I have a 50 cent size round bald spot on side of head. I have had these spots before but the hair grew back. Not this time and hair is very thin on top. I am not on birth control because I am to old (62). It takes forever to get referral ok from my insurance because I have a low income. I have autoimmune disease and other health issues that don’t help the hair loss. I see everything everyone has tried and I have not seen anything that has long term positive effects. I wish there was more hope out there. I can’t afford a hair piece and I hate those sprays to cover up the bald spots because they look terrible. I feel like I need to hide away so others can’t see me. I will continue to hope and research.. I wish you all the best.

Mycurlyhair January 14, 2015 at 3:01 pm

Sarah, That is great news! Are you in the LPP facebook group? Would love to talk to you more! Carolina, mine is also diffuse.

Sarah January 18, 2015 at 7:36 am

Hi Mycurlyhair,

I’d be very happy to chat more. I don’t use fb ordinarily. I’ve just signed up though, but I can’t work out how to get on the fb group ?

I have bald patches and diffuse hair loss. Lab report came back as LPP and female pattern baldness. I have been deficient in many vital nutrients for years but only in the last 6-12 months discovered this through blood tests (likely caused by my coeliac disease, diagnosed over five years ago, but probably had for a good 10 years). Many things can cause leaky gut though not just coeliac.

Sooooooo, not one to take everything a doctor says exactly as reported. I did my own research, LPP clearly a fact. But re the female pattern baldness, I’m not so sure. There is none at all in my family and I researched the minitursation process and found out that if you’re deficient in iron and / or zinc, hairloss can actually mimic female pattern baldness and if you can get your iron / zinc back to the right levels then you will see regrowth.

I’m sure you’re aware though, it’s still not a quick fix because it takes a long time for the iron etc to have an effect. so once you even have normal levels it can take a couple of years to see regrowth.

re the LPP, the anti-inflammatory diet is working wonders. I weakened about 10 days ago and went on an eating binge for two days. But within 24 hours I was itching like crazy again. And it lasted for three days after I’d eradicated all inflammatory foods again. I’m now itch free again and it feels amazing. Not only because the itching is extremely uncomfortable as you all know but because it gives me hope for a future with hair.

Mycurlyhair I’m happy to help you in any way I can. I’ll get on the fb group as soon as I can work out how. If I can’t get on, you’d be welcome to obtain my email address from the administrator.

Sarah x x

Jane March 20, 2015 at 7:34 am

Hi everyone. I am relieved to see that there are others that describe the same experiences with their hair loss and scalp condition as I have over the past 30+ years. I’m 52 and am at the point I don’t want to see a hairdresser anymore as they actually cut my hair too short. At the end of the visit when they give me the hand held mirror to show me the back to see if I’m satisfied, I just want to start crying as I can see my scalp through my freshly styled hair. The less I do to it the better off I am. I still have to keep it shoulder length, because my mother has stated before if I try to grow it out, I look haggard.

Over the past few years I’ve really noticed a difference throughout the scalp, not just the crown anymore, which I kinda expected with starting peri-menopause. My scalp has always been itchy but is now a blotchy red. I know I’m sensitive to strong hair sprays so I’ve tried to reduce the need for this product and go to Dove hairspray and use sparingly. I also started using Selsun Blue anti itch, and it helped a little at first to soften the scalp and take away some itch, but I don’t think it’s meant to use all the time. It seems more itchy now than ever. I have other women in the family suffering the same condition of adrogenic alopecia and we try to compare notes, but none of us really want to talk about it. We’ve experienced the doctors that don’t provide much advice so I’m using the men’s Rogaine that one dermatologist recommended. I also read a Readers Digest article about What Dermatologists Don’t Tell You and it confirmed that women can in fact use the men’s Rogaine, just not the other products that are specific to men. Rogaine does work, particularly arount the perimeter of my hair line, but not so much on top that I can see. I’m glad to have read all your posts and am very interested in the LLP diagnosis. I hope to find some remedy that works so I can share successful results with my family.

For years I wouldn’t look at the back of my head cause I just didn’t want to know how bad it was getting, but my husband is now making comments about how I shouldn’t use the blowdryer etc. so I decided to look at the back of my head today both with hair wet, then blow dried. In order to look halfway normal, I have to carefully comb my hair straight so that the balding doesn’t look so obvious, but it’s definitely getting worse. I’m going to make another appointment with a local Dermatologist to see if they can help with the red itch and maybe even do an allergy test. Stay tuned…

Roz March 23, 2015 at 11:38 pm

Got the devastating news today that I have LPP. I’m trying to stay positive and not to stress out about this – but it’s hard. As someone said earlier – “it could be a lot worse.” Does anyone know if the hair around the balding spot will grow?

Kirsten May 15, 2015 at 10:15 am

Hi Everyone!

So glad to have found this group… I was just diagnosed with LPP this week. I’m 36 and I’ve noticed that my hair seemed more thin than usual. A friend made a comment which prompted me to go to the dermatologist. I honestly wasn’t expecting my biopsy to show anything, and after reading up on LPP (what little information I could find) I’m feeling such a mix of emotions. I’ve always loved my hair and it’s been a real source of confidence for me. I would love to talk to other women with this disease and hear and recommendations. I haven’t had children yet but hope to soon, and it seems like a lot of the meds out there are pretty serious and maybe not the best option for me right now. I know that things could be so much worse, and I am thankful that this only affects my hair. It’s still overwhelming to see the pictures and hear some of the info out there.

Roula August 11, 2015 at 12:24 pm

Hi everyone

I was diagnosed with LPP in Jan 2015 and it has been a very difficult time since. Derm put me on Plaquenil and topical steroids. I have started a ant-inflammatory diet and saw some positive results but hair loss continues.
Does anyone have experience with Plaquenil?? I am thinking bits time to get off it.
I would appreciate any feedback.
Thank you

Peggy September 25, 2015 at 9:19 am

I just returned after an appointment with dermatologist who diagnosed me with alopecia totalis. He suggested shots of cortizone in my scalp where I have areas of scarring tissue. I am 61 years old and this condition can make me very sad, but I try to keep it in perspective. Has anyone tried the shots? I have also made an appointment with an Endo Dr. (Isaac) here in Atlanta for another opinion. Does anyone living in Atlanta have any other doctors they have seen with success? Thank you all, hoping I can remain thankful for otherwise good health.

Beth September 26, 2015 at 10:19 am

Have any of you ladies looked into Ketoconazole shampoo 2%. Not sure, but I think it helps with LPP quickly. Ask your pharmacist. It is available in 1% over the counter, but, I do not think that is a high enough percentage to help with LPP. Also, I have been reading some clinical research that suggests that when used with Minoxidil (Rogaine) that it does slow down hair loss.

Lisa October 7, 2015 at 11:23 pm

I’m really glad I stumbled onto this discuss, by accident. I’ve been experiencing a great deal of hair loss, after moving to my hometown, after being away for over 15 years. I’ve always had shoulder length or longer hair. I previously had hair loss before and utilized the services of an endocrinologist, in the Kansas City area. Relatives believed my efforts of preventing baldness to be unreasonable at that time. I searched for dermatologists with the knowledge in my region to aid with this to no avail. I was told I was pulling my hair too tight in braids, rubber bands and using too many hot appliances, etc., when I did none of the things. I really glad to learn efforts of some doctors have evolved.

I noted that the dialog goes back to 2009. A few have noted their ethnicity. Now while I am not intending on causing any issues with with race or ethnicity, in the township/city of which I reside, I have notice the great difference in balding of African-American women, while other races seem barely affected. And it seems the problem among African-American women is becoming of epidemic nature. Today I counted more balding black women than black women with normal hair, including senior women who have pressed, utilized the same products and worn their hair the same for over a quarter or half century, who never experienced hair loss at the magnitude their are now.

I don’t know how many people are aware of the use of Microorganisms to “frack” petroleum products presently, or of the effect of the biproducts being recirculated into the environment. The more difficult residual oil extracted contains more Microorganisms, and is sold to farmers, manufacturers at a discounted rate. Many products, such as lotions, hair pomades, conditioners, cosmetics utilized by blacks many contain the Microorganisms, as a result of “fracking”. Also the water, and meats contain chemicals and hormones, of complex status. “Fracking” manufacturers are not required by the US to disclose the poison being reintroduced to the public. This makes me wonder if the great epidemic of women, and black women in particular losing our hair is associated with the man-made poisons. I’d be interested to learn of the response if someone asked their well informed dermatologist if their hair lose might be associated with Microorganisms, which easily change to adapt to different environments.

I’m going to try to find a dermatologist using the CARF, but if anyone know of a knowledgeable one in the central region of Kansas, please ad it to this site. I will watch for it. I have used women’s minoxidil (Rogaine) 2%, and am considering visiual. I have a relative whose had luck with it. My newest physician is so very absent or of pretense, she says Head and Shoulders should be adequate. She insulted my intelligence. I only just heard of the Ketoconazole shampoo within this last month.

Lisa October 7, 2015 at 11:45 pm

Also reading through the comments, it seems the person’s testimony about the DPCP, or diphenylcyclopropenone and the Lovenox, is effective.

Love to hear more comments!!

Sally February 1, 2016 at 6:37 pm

Andrea,
My situation is really similar to yours, i would really love for you to post an update, Please. I am really going through a hard time. It’s been a year since my hair loss and my scalp biopsy results came back to be like yours. Please give us an update…

Leave a Comment

Join the Women's Hair Loss Project Network to meet other women
with hair loss. Share your thoughts, comment, rant, rave, laugh, cry...communicate. Click To Join
Just Launched - Join the NEW Forum for The Women's Hair Loss Project. If you are already an existing member of the Network then you already have an account set up and will need to use the Reset Password link to enable your forum account. Click To Join

Previous post:

Next post: