Thank you, Classical Anne for your openness.  I know some women find it hard to be so bold about their loss, and their treatment & outcomes.  What I'm confused about are the nickel size bald spots throughout?  I thought FFA was just the front hairline?  Do you have another diagnosis causing the other patches, in addition to the frontal loss?  How many years have you been managing through this?  And lastly, are you going to get back on a regular schedule with the shots?  Sending you a huge thanks.  I hope you had fun with your grand-daughter.

Good questions, Lo.  Unfortunately, I also have androgenetic alopecia -- female pattern baldness.  Unlike male pattern, on us it is diffuse thinning throughout, and in my case two areas at the upper back of my head [just beyond the crown] are now revealing a nickel spot, and on the crown there are shiny bald furrows about the width of my littlest finger.  Truly more scalp than I ever thought I'd be sharing with the world.  But in other ways, I am fortunate that I had a relatively low hairline to begin with.  So I lost the first inch or so, starting with a defined widow's peak, without anyone but my hairdresser and I noticing it.  Now the tide is waning more rapidly and visibly.  And as I said in an earlier post, the remaining hair is so thin on top that I have to reach back from the crown and pull forward to have any bangs at all.  New found sympathy for male comb-overs.  In addition to the 2 types of alopecia, I am also on several long-term maintenance medications for a variety of other ailments [several of them autoimmune] -- and the chief side effect on some is hair loss.  All things considered, I count myself lucky not to have gone stark bald already!  To answer another question, I believe the thinning began about 10 years ago, perhaps age 55.  I knew nothing about FFA til I asked my primary MD 3 years ago if she knew why I was losing my eyebrows, and I showed her the angry red bumps at my hairline.  I had been on mega doses of Biotin supplement for several years, and wanted to believe the forehead issue was new hair growth.  But she was stumped and sent me to a Derm, who also was stumped and took a small chunk of frontal scalp for biopsy.  She was as surprised as I was at the diagnosis.  But again, I think I may have been lucky that she had never heard of FFA, because she immediately did some extensive research and presented me with all known options at my next visit.  It is most unfortunate that some derms think they already know it all, and are not open to new ideas.  For the next two years, my only difficulty managing the situation was emotional.  It is a very difficult thing to accept, knowing that it will continue receding until some unknown stopping point, and that it can never be reversed.  I bought a wardrobe full of scarves and headbands, and began thinking about a wig for the future.  I first wore one for special occasions a little over a year ago, but because I'm retired, I don't need it every day.  And my scalp does get irritated and itchy if I cover it often, or for several hours.  But until this summer, I was still able to disguise the loss, one way or another.  Now, you just can't miss it -- and you can see that in other folks' eyes.  But yes, I do intend to continue with the injections for at least the near future.  FFA slipped into high gear all of a sudden, when I missed two sessions [I usually go every 6 to 8 weeks, and get 15 to 20 injections].  And yes, we've had a ball with our precocious and busy, busy little 5-year old granddaughter, but time to go home and recover tomorrow!

I'm seeing my doctor at Northwestern Hospital (in Chicago) in two weeks - I'll ask her! 

Lo, thanks for the compliment, yes, it's my hair (at this point!), I was only officially diagnosed a year ago although started losing my eyebrows a couple years before that so am sure I've had it for at least that long.   I've lost maybe an inch off my front hairline and a little off the temples/side but my natural hairline was low to begin with and hair is thick so it doesn't look odd except skin a little lighter there and more shiny where hair loss occurring.   It's slow but steady.  Sometimes I think it's stopped but then I have a "flare" - redness, burning, miniaturization occurring. I can't tie the flares into anything specific.   I've been tested for food sensitivities, allergies but nothing significant was found.

I always disliked my low hairline and actually like this look a little better but wish It would stop right here!  Which I know it won't. I started off using steroid creams (which burned) and plaquenil (which I was allergic to) and prescribed Avodart (which I'm too nervous to try at this point).  

So I'm trying to eat healthier, address nutritional deficiencies (D3 and Iron) Looked into hormone imbalances and just started taking supplemental prescribed bioidentical progesterone (in capsule form).   I've been estrogen dominant my entire life (self-diagnosed) and believe that may have something to do with my FFA and other inflammatory autoimmune conditions (eczema, seb derm, rosacea, alopecia areata and now LPP/FFA).   All my skin/scalp/inflammatory issues started developing in my late 30's, early 40's when progesterone starts to drop significantly.

If after six months the added progesterone seems to make no difference I may try Avodart as a last resort as it seems to be one of the few prescription drugs that does arrest the progress of the disease.  

Avodart functions as a 5 alpha reductase inhibitor (prevents testosterone from turning into DHT, which is miniaturizing and killing our hair follicles).   But it was developed for men with prostate issues, not really designed for a woman's body and there haven't been any studies on side effects for women.

Progesterone is also a 5 alpha reductase inhibitor and one more natural to our bodies which is why I'm trying it first.  Progesterone also has anti-inflammatory qualities.  Yes, I'm my own guinea pig and will let everyone know if it seems to help - or if it causes any problems.  I'm under the care of an GYN practice which prescribes bioidentical hormones and will have my levels monitiored periodically so am not recommending this to anyone else at this point because we all have unique medical histories, do no harm and all that jazz!

As far as estrogen I think we unfortunately, get enough supplemental estrogen via our food and environment which is possibly why this disease exists in more "developed" countries so am not adding bioidentical estrogen to my supplementation, although my Nurse Practitioner indicated that's always possible in the future. 

When getting tested for hormone imbalances it was also discovered I am in the early stages of Hashimoto's (low thyroid) and am taking selenium for that at this point and potentially Moducare, dessicated thryoid in the future.   People with LLP much more likely (30% as opposed to 11% of general public) to have thyroid issues, and I know many others in our group have thyroid issues so that plays into this too.  It's so complicated!   Progesterone is involved with thyroid function (well a lot of factors apply but still. . .) which reinforced my belief, that in my particular case anyway, supplementation may help my current health status.

Well enough about me!  I learn so much from all of you, appreciate the sharing, wish everyone well and will share whatever I learn, experience as well.

LSE,

I am so sorry for all that you are continuing to go through.  At your age (especially at your age), appearance is so important. I am almost 60 and I am pissed at losing my hairline. However, if I could choose, I would prefer to lose mine and you keep your own. You are younger than my children and my heart breaks each time I see your posts. I pray that the doctors figure out what is the problem and that it is solvable.  From across the miles, I send my heartfelt love and support to you.

I'm a little curious about the early members of this support group that we haven't heard from in a while.  I gleaned so much information from Pam W, Celia, & Debs when I was first diagnosed almost two and a half years ago.  I'm just wondering how you are all doing now.  If you don't mind sharing, could you let us know if your FFA is still active, and if you're still being treated by your doctor. 

It is encouraging to hear from people like PamW.  I remember getting diagnosed in January, 2015 (after losing hair for 4.5 years prior), and seeing some common names - of women who really helped me realize I wasn't "on an island".  I also remember calling around, trying to find a support group here in PIttsburgh, PA where I live... only to find the closes was 6 hours away.  So... I started my own - and my first meeting is next Thursday, 8/27.  If any of you know people anywhere around this area, please let them know.  I know many of you are over-seas, but there are also a lot of us who live in the states... so I am w/in driving distance of WV, NY, OH, MD... and would absolutely welcome folks at the meeting.  We have a hair replacement lady coming (I use her)... who is wonderful.  She cuts small pieces for me for my bald sides, as well as bang pieces that I tape in. 

Anyway - if there's someone on this forum who you have chatted with, and is anywhere near Pittsburgh, PA... please reach out to them, or have them email me.  Lobertella@yahoo.com

Thanks to you all.

Little Sad Eyes, I also hope you will pick up the phone and call someone.  I am posting this for you.  It is the suicide prevention hotline.

Hours of Operation: 
Available 24/7

If the service appears offline or busy, please call the Lifeline at 1-800-273 TALK (8255). We are available 24/7.

Please call and talk.  I urge you to do this.  

There is hope and help when we feel the most desperate.  Losing hair is devastating, but you can live well with or without hair.  

Call a loved one.  Call a friend.  Call a help line.  Many care.  Many are there to help.  

LSE please try not to despair.  Maybe your derm hasn't gotten back to you because you don't have FFA, which would be a good thing, maybe a reversible thing.  From what I've read your symptoms are different from mine. My hair loss was very slow.  So slow I didn't notice it until it was too late.  

As far as drugs that will slow it down, I'm taking Plaquenil, and use Clobetesol foam.  But I'm not really sure either one is doing anything.  As far as the "lonely hairs", in my case those are the ones that have never fallen out.  So the loss is in a strip behind them.  They don't resemble new growth or baby hairs at all.

I know it's hard when you're so young.  When something terrible happens, you can't imagine ever feeling differently.  But it will get better. It's better not to fixate on it.   Please try to talk to your Dad, or go to counseling to help you deal with this.

LSE. If you send me your email I would be happy to talk to you xx

LSE, I'm too in a big depression because of aggressive hair loss, but keep in mind that there's hope for the future. 3D bioprinted hair follicle and stem cells thérapies are not that far away especially in japan where they can skip phase 3 in regenerative medecine. Do some researchs regarding those subjects you will see that the future looks bright and hopeful.

But for the moment Im like you and it's difficult to live with aggressive hairloss.

Those researchers in may 2015 found a good aldh1A1 inhibitor that could be a solution for our disease. At least slow it down.

You should make your dad watch that recent study regarding altered vitaminA metabolism/signaling, maybe he have the contacts to make this chemical compound become reality somewhere in your country. And if it's the case, he will be my hero too ^^

Hey Rachel , here it's the presentation's title of the 4 researchers/dermato at the hair scientific congress in may 2015:

"Altered vitaminA metabolism/signaling in CCCA patients"

LSE,

I have FFA. I have lost hair on my legs and arms. I have lost a shiny strip around my hairline. Smooth like a baby's bottom and very shine. I have a few eyebrows. It did not affect eyelashes. The rest of my hair is definitely thinner than before but that is probably due to aging.  I have no peach fuzz.

Hi LSE - You are going through so much at a young age, and seeme to be doing this alone. Do you have any support - family, friends - that can accompany you to to doctor visits? You have mentioned your dad, how about mom or siblings, an aunt, or another older trusted family member or friend? Your biopsy results should definitely be back by now (mine took a week, tops). If your derm office won't communicate with you try calling your regular doctor to intercede for you to get those results. Does your regular doctor know of all your different symptoms? You should make an appt at that office so they can send you to apprpriate specialists. You seem very knowledgeable in your medical terminology and various disease progressions - curious if this is by reading up on various diseases because reading this stuff can both scare the wits out of you and convince you that you have symptoms and that you're suffering from said condition(s). The mind body connection is a very powerful thing! I urge you to see your personal physician for a complete work up to see what is going on - once you do this you can be referred to appropriate specialists. Once you know what is going on, you can put your energy into treating what you do have instead of worrying about about what you might have. I say all this in a very caring way - anxiety can overtake your life and you can get it under control. I know this overwhelming but you can get through this - it is hard to see the light at the end of the tunnel when you are stuck in the middle of the tunnel - but have faith the light is there!

What's wrong with some of these doctors?  They need to put a little bit of care in healthcare.

Little Sad Eyes, I am deeply sorry for all that you are going through.  And I truly understand that at 22 it must seem like your young life is nearly over before it began.  There is really no way to help you see the future the way that someone my age sees it.  But I wish that you could believe me when I say that there are so many good things still waiting to happen.  I have studied your photos, and you are a truly beautiful young woman -- long hair, shaved hair, no hair.  There is such potential for a very happy and fulfilling future.  I know how sad it is to think of losing so much of your lovely hair.  But if it comes to it, I think you'd be stunning in any kind of wig, and you could have fun experimenting with all sorts of styles and colors. And I'd say there's a far better chance of a medical cure in your lifetime than in mine -- you might not be dependent on 'artificial' hair at all.  I remember 22 fondly, when I had long and gloriously thick hair, so I honestly do feel for you.  And even at 64, I felt the diagnosis as a huge emotional blow.  It took many months to come to terms with it, even from the perspective of retirement living.  It is surely that much harder for you at 22, but it is not impossible.  You can, in time, learn to deal with it, and make the most of your precious future.  You are obviously well educated and quite intelligent.  Add that to your truly lovely features, and it's a winning combination!  I wish you peace and contentment, now and for the rest of your wonderful future life.

Thank you Classical Anne from Sad in Chicago.  I had a birthday yesterday, am not age 68.  Have been dealing with FFA for over three years now and wearing head topper clip ins for two.  It is difficult at best and I cannot imagine myself when I am REALLY old and not working with only retirement funds and having limited capability of caring for myself and my appearance the way I do now.  Having said that, no matter what time of your life this happens, it is not life threatening, no one got sick, no one died. Everyone can always figure out a way to look ok given all the options out there, and believe me if I were young and pretty still, I would definitely shave my head and still be me.  Having also been a breast cancer survivor there is no doubt you learn what is important and how to maintain perspective.  Little Sad Eyes:  I am sure that with some time and gaining some perspective of your own, you will come to grips with this and make a perfectly wonderful, healthy life and future for yourself.  Best wishes to you.

LSE raises a very good point since this condition is most likely connected to hormone imbalances, and that is whether hormone replacement therapy has helped anyone.  Or did FFA happen to you even though you were getting hormone replacement therapy.  Specifically I'd be interested in anyone who took (or is taking)  bioidentical hormones.  Because I don't think synthetic hormones really do the trick and have actually been proven to cause more problems than they solve.

I did Rogaine and Propecia for a while, but gave it up.  Maybe it will help what is left, but certainly, nothing will help grow back what is lost.  I lost eyebrows, eyelashes are OK, and arm and leg hair gone, but I understand many post menopausal women lose arm and leg hair too.  This part I don't mind; facial hair gone as well---bleached and tweezed for years! face now smooth as a baby. Pubic and under arm skinny but definitely there.  Whatever.  All i care about is as I get older is I can get my topper on straight and there is enough hair to clip it to.  I still dye my hair and topper to match and thank goodness can afford all this upkeep.  One foot in front of the other!!!

Kat - My FFA also started while I was on bio-identical hormones, and I also went through thinking that maybe it was caused by them. I talked to my doctor about it and called the company, but, as you said, there is no evidence this is the case. I have now been off of them for many years though. 

Anne Louise - I don't know where you live, but I live in the U.S. and my dermatologist writes me a prescription for Latisse (bimatoprost ophthalmic solution) and I order it from Canada. I've been doing this for several years and it works out great, and SO much less money. I use it at night on my lashes (still have good eyelashes, but they were really thinning before I started using Latisse), and  brows. Also, that study is interesting. the sides of my brows and eyelashes started going first...but I immediately started using Latisse. I still have body hair, although my arm hair is sparse...still have to shave my legs though.

As far as Rogaine, I have been using it for a couple of years now. I do remember some shedding early on, but then my hair started to thicken up. While hair did not grow back on the scarred areas, the hairs behind that has gotten thicker and helps to cover up the scarring. I use it every night around my hairline and back about 2" and on my brows. My brows are still in tact, although thinner than they used to be. 

Ann Louise, I have also read that those who lose their eyebrows have less severe cases of FFA as well, but I wonder if anyone knows for sure.  I still have my eyebrows & eyelashes as well as the fine, colorless hairs on my face.  I don't think there's any underarm hair left, but it's really difficult to tell (I pass over  my underarms with my razor when I shave my legs just in case!)  I still have hair on my legs, but have lost most of the hair on both arms.

I wanted to post these in the main board as well

While there is no certainty that long-term results will remain, I've come across a few pics of hair transplant with scarring alopecia. I don't think it's hopeless. And for those of us on here who are dealing with this in our 20's and 30's, buying 2-6 more years with an in tact hairline could mean the world, even if it were to disappear again.

Also, It seems like those with CCCA and LPP get transplants (somewhat) frequently with success. Is CCCA easier to treat? It seems like I see more success stories with that.

Here are two frontal fibrosing/lpp -

http://mdnewhair.com/tag/dr-marc-dauer/

http://www.hairlossexperiences.com/view_topic.php?id=4493&forum...

https://hattingenhair.wordpress.com/2014/10/21/hair-transplant-resu...

LPP

http://www.truedorin.com/photogallery/case-studies-female-3542/1200...

Unidentified scarring

http://www.womenscenterforhairloss.com/photo-gallery/follicular-uni...

http://www.hairrestorationnetwork.com/eve/179183-dr-dua-hope-revive...

This study states she held 85% of implanted hairs by the 6 year follow up

It's a PDF so google "transplante capilar en una paciente con alopecia fibrosante"

Wow, SAU, those sites are interesting.  I went to a plastic surgeon recommended by my dermotoligist.  He was not familiar with FFA, but did think transplant might work.  I went through his gallery, etc. and saw good results, but was worried after hearing that if the FFA returned, it could fall out again.  He was not aware of this and so we didn't discuss.  He thought we could try a small test area, but the cost is unbelievable and I got discouraged.  

I might look into this again based on your research too.  I guess the biggest question to everyone here is do you know anyone or have you had a successful transaplant.  And what is the story if it comes back.