Awesome....good for you.  I could never do anything like that as my hairline in front is so receded I look like a freak.  You look cool, cool, cool beyond cool.  

Thank you all. I feel a lot better just being able to cover it up. Kristen P he just looked at me and said "you don't have it", did a pull test on my fringe and sent me away with oral minoxidil. He looked at me like i was a freak the whole time i was explaining to him how much my hair has changed. He agrees that i have Androgenetic alopecia, which i already knew, but he just said "Look, you don't have ffa, and even if you do, nothing will help you. See me in 4 months". I MADE him take a biopsy though. I said that i wanted it done for peace of mind. I'll find out in 1-2 weeks. Gosh some of these doctors are total A holes!!

Lo that's exactly what he said. I mentioned FInasteride, he said "Any dermatologist would laugh you out of the building", i mentioned the anti-malarial and doxy and he just laughed and said "nothing will work". What a great guy.

So ladies, my derm also told me nothing could be done.  She suggested all the things that you all keep talking about, but, in fact, she said at the end of the day there is no documentation that any of it worked.  I started off with rogaine and propecia, to no avail.  I decided against anti malaria drugs, etc., because I did not want to take medicine of that calibre for something without secure documentation that it was worth it.  I do nothing now.  It stops and starts, but mostly seems to have stopped for a bit.  The intital damage was so debilitating to me however that I cannot see how anything would "work".  What does work mean?  Will it grow your hair back?  Will it stop the progress?  Does it matter?  Gone is gone.  I am trying to get over it and live with hairpieces and other options.  As I said, some days I look great and others I feel that I am ugly and you can tell my hair is not real in spite of the fact that I have spent a fortune.  And, summer, which I used to love is ruined with heat, persperation, time at the pool (not anymore) working out and walking (hardly any more) and running to put my stupid thing on my head when grandchildren sleep over.  Lack of eyebrows totally a bummer too, although a cosmetitian helped me with that.  

Anyway, I guess the answer is to live with it, take care of yourself and try to get over it as best you can.  Do not fill your bodies with awful drugs.

Little Sad Eyes - I am shocked that your doctor was so dismissive.  Particularly about the finasteride.  If you have AGA, then finasteride can help with that.  Whether it helps with FFA is still unknown (depending on the study that you read)... but he at minimum should have given some credit to that solution for the AGA.  This can be a distressing diagnosis, and much of that is the unknown - the "what is going to happen"... the "how bad will it get".  As hard as it is to do - look in the mirror every day, and tell yourself that you are beautiful.  It sounds corny, and it isn't easy to say that to yourself... but try it.  You will start to believe it.  You are a beautiful young woman.  I think you would look sexy/beautiful even w/out hair... you have great bone structure and pretty eyes.  Believe me - you have a lot going for you.  Don't let this consume your young life.  I would also switch dermatologists.  Even if there isn't a definitive cure - just anecdotal "evidence" that some medicines may work to slow it down - he could at least have some decent bed-side manner... which, clearly is not happening.  When do you get your biopsy results for the FFA? 

Little Sad Eyes, I think several of us have had a bad ffa experience with a doctor.   I had to switch from my derm of more than 15 years (a Harvard graduate).  I diagnosed myself from searching the internet & scheduled an appointment.  My doctor never even took a close look at my hairline and said I probably had the beginning of female pattern baldness.  He spent several minutes asking about my family's history of baldness and said that there was very little that could be done.  I refused to let him leave the room without taking a close look at my hairline. He took one look, and literally ran out of the room saying he needed to consult with his associate.  I sat in the examining room for probably 30 minutes before he returned with his associate. They both confirmed what I had figured out on my own, I had early stages of ffa.  After telling me that I should prepare myself for a future of wearing wigs, he prescribed a topical steroid (to help with the itching and pain) and told me to come back in 4 months.  I never went back to him.  Three weeks later I had an appointment with another doctor (not a Harvard graduate) who actually took time to examine my entire head and sat down with me to discuss options.  I hope with all my heart that your case isn't ffa, but that doctor had no right to speak to you like he did.  You deserve a second opinion with a caring doctor.  It's true that ffa is very difficult to treat, but no one should take away your right to hope.  My ffa is still active, but I believe that it would be much, much worse if I hadn't decided to take plaquenil.           

Mike'sDeb:  What are you considering clean eating?  No carbs at all, or just no refined, processed foods.  Have you lost weight?  Do you exercise?  Thanks.

Mike'sDeb - that is wonderful news! and certainly gives us some hope that eating can affect this condition. I certainly notice that gluten affects the level of inflammation I have in the active area. Good luck and I sincerely hope that the "burn out" is permanent for you

LSE, your story just gets me so worked up because I'm SO sick of some Dr's who are completely NON interested in helping patients.  You know what really got me going here is that yours is a Harvard Graduate.  I recently went to a GI Dr in my local area because my regular internist is too far away to get a endoscopy from and so I chose this Dr with Greenwich CT Hospital (really nice hospital) who has the pinnacle of education, Harvard Undergrad and Stanford U Med School.  She's a nice woman, but totally disengaged and no matter how many times I asked her what foods to eat or not eat for my stomach ulcer and colitis she repeatedly said food has nothing to do with either, it's only caused and aggravated by ibuprofen, advil, and anti inflammatory meds.  I had a RA Dr tell me the same thing as your Derm told you, "you "refuse" to take the anti inflams or the oral steroids so there's nothing we can do for you"  I "refused" to take any more meds form them because it was THOSE meds that caused a bleeding ulcer in my stomach!  What a mess!!  FFA is not so hard to diagnose really, if the hair follicles seem kind of red around them or are obviously red around them (along the hair line)...it's likely FFA.  Also, your Derm COULD take a Biopsy!  I mean honestly, I hate to say this but just the fact that you're so young is clearly a reason for him to have way more concern then, "oh well, sucks for you".

most definitely seek help elsewhere.  In fact keep searching for a Derm who knows what they're doing!!  You'll know that person when you find them.

Anyone started using rogaine and noticed it made brows and hairline worse? Mine is receding day by day. 

LSE, I have been using Rogaine for about two years now and it has definitely helped my eyebrows to regrow and it has thickened up the existing hair around my hairline. I don't know if it works for everyone, but it has worked for me. 

To that I would add, better sooner than later with Rogaine.  I have been using it over a year on my brows, with the result that they thickened where they did exist, but never filled in the outer half, where it had become bald before I decided to try it.

Someone sent an email message about is it ok to stop trying to stop FFA with medicines, treatments, etc.  Don't know if it is "right" but indeed, I have stopped treating the condition.  I have spurts where I think it is flaring up again with some increased loss, but overall, it is so slow that I think it does not make a difference and I am will not use crazy things to try to stop it.  I only want it to grow back.  it is advanced enough that even if I stopped it, I would still need additional hair pieces, etc., to cover the damage.  I did go on weight watchers and trying to eat unprocessed food only, and am having a bit of success in feeling better in general.  I have to exercise more, but have been reticent because of the hair issue and how I look.  I am walking with a hat on and trying to do 10000 steps a day.  This disease makes you a little lonely.  Hard to go on invited vacations, etc. to places where you need to be free like the beach, etc.  UGH!  But, I am trying!!!!!!!

It was me who sent an email out, I mean to add a discussion.  Still new to this. Sorry. Sad in Chicago, thanks for your feedback.  I feel the same way.  I am trying my hardest to focus on how I feel rather then how I look.  I am starting meditation, clean eating and increasing my daily steps.  My doctor is great, and wants me to continue to fight the disease, but at what cost?  No energy, high anxiety, low mood, dizzy spells.  Though it is hard to stop worrying so much about how you look living in our current society.

So many angles to attack FFA and so many meds that work for some and not others.  CARF (Cicatricial (scarring) Alopecia Research Foundation) will be holding it's Patient/Doctor conference June 3-5, 2016 in New Orleans.  http://www.carfintl.org/ for more info.  It's good to meet others with this frustrating condition.

One thing I've found to deal with my hair loss around the front is to wear headbands across my forehead where the bare spots are. If you don't mind the sporty look, there are many kinds to choose from. I've bought them at Wal-mart and have different colors or prints to match my clothes. I wear them mainly when I'm going to be outside when it's windy or just outside in general, or more active. I can still pull my bangs to the front and hide my hairline fairly well, but the head bands give me extra protection. I've worn them swimming too, although I don't get my head under water.  Bolderbands.com is one brand that are nice.

Lo, i have heard nothing back VERY frustratingly. But since using rogain the already bad recession is worse.
I'd also like to ask for all the peri menopausal women, is your shed far worse during your period? 

I am using a dermaroller once a day and 5% rogain twice on whole head, recession and brows. I seem to be gaining no ground, only shedding far far more and i have been using rogain for maybe a month.. perhaps a bit longer. Maybe like 5 weeks. I have taken some photos In the one month that i have had my hair done just to show you.

Ladies. No my derm has not told me anything solid, yes i have hairloss all over my head badly... but my hairline is undeniably receding very badly. With no recovery. So IN YOUR OPINION.... is this ffa? Is it like yours? Please me me

these are the most recent... 

And finally some close ups

Sorry about my face...

I have itchy forehead too.  I figured it was my bangs and not totally associated, but now I see a lot of people suffering the same issue.  Also headbands are torture and I love them!  They usually cause more itching and they exacerbate the tenderness.  it's frustrating.

LSE,

Your hair loss seems different from mine. I have a few eyebrow hairs. about 2 inches of hair is lost above and behind my ears. About 1 inch is lost at the forehead and temples and on the right side back of my neck there is a 2 inch bald spot.  I have significant overall loss but at 60 years old, I guess that is not uncommon.  I am hoping that you do not have FFA. Your hairline at the sides look fairly intact. I am not sure how much you have lost at the forehead but it does seem like more than the sides. I see the spot at the back which does look like mine.  You have good eyebrows.

Dragon&Fox, my forehead also itches sometimes.  Right now it's tender & feels a little swollen.  I rarely wear headbands or hats because they make my head itchy & painful.  I also hate windy days because the wind blowing through my hair is extremely painful & leaves my scalp tender.  It makes me wonder if I'll be able to tolerate a hair piece when the time comes to get one.  It's interesting that my doctor seems surprised every time I mention the pain associated with this disease because my scalp doesn't look that irritated.  It has gotten better since I've been taking Plaquenil, but windy days still make me cringe.

LSE, your hair loss is different from mine as well.  The first thing I noticed was a smooth patch where my widow's peak used to be and the loss of the short baby-fine hairs around the sides of my face. 

LSE your experience is different from mine also.  I follow the pattern of others described here almost exactly.  Bald spots in front of my ears, and generally recession of about 1/2 inch all along the front of my hairline.  No loss anywhere else that I can tell, although there is a lot of hair in my combs and brushes so maybe I am losing it all over. No loss in the back, no hair loss anywhere else except in my eyebrows, which my Derm thinks is just normal age related.  (I differ in opinion on that.)  It's often itchy, and often I get bumps all over my head that itch, which I thought might be LPP. 

From what I've read, there is no way to regrow hair with FFA, so if you have little hairs coming in from Rogain, you probably do not have a scarring alopecia. Which is a good thing!

My hair loss is similar to what the others have described. I am only 39 and am pre-menopausal. I don't notice any difference with hair loss in my cycle. I lost my widow's peak first as well as most of my eyebrows, then loss above my ears and temples. Still very slow progression for which I am thankful. I also get itchy, tender and red on my forehead with spots on the crown and back of my hairline. Regaine has helped to thicken up around my frontal hairloss and eyebrows.

I am pragmatic about this as have 2 friends fighting cancer and although their hair may grow back after chemo, there is a chance that they may ultimately lose the bigger battle. FFA is awful but it will not kill me and I hope I can teach my daughter through this that appearance is not everything, and to love yourself no matter what.

I have not found headbands to be very successful.  I did at first about a year ago, but then I lost hair at the back of the head near the crown and the headband did not cover that.  I also can't keep them in place because I have lost hair at the back of the head.  I also spent an arm and a leg for a human hair topper that I don't like because it doesn't match my hair well.  I've taken two wigs and cut them down to be a topper. I can them my wig hacks.  I sewed in clips.  They are adequate and work better than the human hair topper.

I wear headbands sometimes. I have a lot of hair loss- bald patches at temples, all over the front that goes back about 2 inches. I've grown my hair longer and pull my bangs forward which hides most of it, but they are thin and I know you can see through them to the bald areas. So I find headbands one way to cover it and they stay on pretty well. I've bought many different kinds and some are too tight and give me a headache,and some too loose, but some have been good. The rest of my hair is fairly thick - although not as thick as it used to be, and curly. I wear the headbands sometimes with my bangs under them and sticking out the front - but they sometimes slip, or wear them against my forehead with my bangs coming over the front and sides. It doesn't cover my temples but it looks better than going without and having the wind blowing my hair all over. I will wear a baseball type hat too, but then again, those can blow off. I've never tried a wig or topper- they sound very uncomfortable.  I will try to post a picture if I can.

Lo -- take the hairpiece to a good hairdresser or wig maker and they will "style" it for you so it blends with your natural hair.  That is the point.  Real hair should be easier to work with.  Just tell them to be careful and go slowly cuz if they cut too much no growing back!  With the money you spent, you should be happier.  I have a real hair one for day time, work, and most occasions, but recently bought a similiar synthetic for exercise, pool, walking, etc. My hairdresser cut them the say way so they don't look like I have two different styles.  Yes expensive and yes a pain in the butt, but I have NO CHOICE.  Being totally bald might ultimately be easier than camoflauge.  Further, the FFA is so unsightly with the way the hairloss exhibits itself all back from the face.  

I tried headbands for a while but the loss is too great to work with it in the front.  Also my forehead is so white compared to the rest of my facial skin that I look kind of like a freak!

Sad in Chicago - are you taking any medications/treatments?  I recall prior posts, but cannot remember who said what.  How much have you lost - and is it mostly from front/top hairline - or more loss at temples and down by the ears?  Just curious...

Karen - I would love to see a recent pic.  I've seen your posts in the past - and you always have a positive comment!  Thank you for that - and send that picture!  They are easy to upload onto this site.