Hi spoilmygirl, I too cannot answer all your questions, I probably have had FFA for about six years?  Hard to know but I remember a hair dresser telling me the front Bart of my hair line was all inflamed, not associated with any itch or tenderness.  I just applied some cortisone I had and forgot about it.  Fast forward to Christmas 2017, and my new hair dresser was shocked to tell me I had lost centmeters from front of hair line.  I hadn't noticed.  I also have list all arm hair, eye brow s thinning, but think have improved since castor oil application.  Frontal hair loss may still be occurring but at a very un  noticeable rate, fingers crossed it has burnt out.  I don't ever see fall out of hair, neither does my hair dresser when washing my hair.

Dermatologist Said I also have  female patterned hair loss( genetic) which I am drinking spearmint tea in the hope to stop or slow down its progression.

Good luck, and whilst I'm a little calmer now, I initially was an emotional mess, I feel for all the lovely women whom have FFA, and thank them for their support thru this group

Thank you 3 for your replies! A dermatologist near me must of had a cancellation because an appt opened up for Monday. I snapped it up because I was told first week of May last time I tried to book. I will be sure to take a list of questions when I go next week. 

Good on you spoilmygurl, and good luck at appointment, they charge like a wounded bull so yes have your questions written down.  Hope you get some answers

Hi there! Just wondering what face treatments would anyone recommend as safe to use. My facial skin has become very uneven all over and little bumps at my temples. Not sure if just natural aging or FFA responsible. My beautician is suggesting a peel by DMK but sounds quite severe and pricey. She says definitely no scrubs?

Hello, I haven’t postednin a while because my keyboard stopped working on my iPad, and this annoynace plus the continued progression of the hair loss and my funky, spongey, sort of painful scalp pushed me into a mute introverted space of ... introversion, to be repetitive. 

I have been using Nasalcrom on my scalp. No difference. I continue the Clobestasol (ditto). I should be regularly taking Doxycycline but I forget to. Since January I have lost about a centimeter more in front, on top, where it’s nice and visible. The whole top is thinner and flatter. 

Sorry to suond so negative. I follow the FB page but dont like posting there for privacy reasons, yet they have a lot of good recent information. The spelling errors btw are from lack of real keyboard ad I said!

so there is where I got the idea of the Nasalcrom, and now they are talking about Jak inhibitors that suppress the immune system. Scary stuff imho. Side effects include cancer, but hey maybe you keep your hair.

 I havehowever half-heartedly begun an anti-inflammatory diet again.

i don’t expect it to do anything for my hair but if I feel better otherwise than it’s all good. Any linnks or ideas will be appreciated.

I wish headbands didnt look so odd on me...

good to be back writing to you, 

Toby btw I didnt want to take Finasteride which was also prescribed for me - just too scary as are the Jak inhibitors. I do appreciate the information though and the research being done gives me hope that at least some people are trying to do something. 

I am feeling quite anxious again today.  I've had to try to hold tears back because I'm feeling so down.  I've been taking hydroxychloroquine for 3 months now and continue with the clobetasol and I don't see any signs of stopping my progression.  I was told it would take 3 months to start seeing results and, well, here we are......

I have so much hair all over my head except for where I need it in the front and on the sides.  My ear on the right side of my head is starting to poke out of my hair because it's gotten so thin.   Again, I am always looking at other women's wonderful thick hair - some are my age or even older - and I ask, why me??  This condition has turned me into a recluse since I'm too self conscious to go out any where but to work and the grocery store.  When I go to work I hot roll my hair so it looks thicker, add tons of hair fibers and hair spray to look presentable, but I'm still self conscious about it.  

If anyone is brave enough to try the JAK inhibitors I hope you are able to share a success story.  I had an allergic reaction to Finasteride so was unable to take it.  

I also have been doing the gluten, dairy and sugar free diet for 3 months.  Also ditched all chemicals in beauty products, shampoos and lotions.  I can't tell if there has been a difference in my hair since I still have visible disease, scarring and hair loss.  

Burnout and/or acceptance - please come find me.

Dear Kandy 15

so sorry that you are having such a tough time with this condition.   My hair scenario sounds very similar.  It’s probably early days re hydroxychloroquine and if it does work it may be subtle differences in your condition.  As awful as you feel now try to remember that you will have better days.  One of my ways to handle it is to think actually most people aren’t looking at my hair...that this might be the best I look etc etc it is incredibly hard though but you will have better times.  Big hug x 

ps. Not willing to try the harder line medications

Kandy15, I hope you are feeling better today, I also hope you have some luck with your medications and you notice a change for the better soon.   Hugs to you and keep posting, both the good and the bad! That is what we are all here for each other for :-)

Thank you Afraid and Minter for your caring concern. I definitely have up and down days with this condition.  It seems that the weekends are the worst times for me.  On those days I don't fix my hair all up like I would to go to work so it looks icky and the glaring forehead hair loss is noticeable.  Also, my husband passed away 9 years ago and my kids are grown and gone with families of their own so I have some loneliness issues going on.  I used to be involved with Zumba and had made some friends there but since FFA came into my life I have stopped going because of my hair.  Headbands don't really help. 

Anyway, I'm feeling better today because my make-up is on and my hair is rolled with bangs that cover the loss to a certain degree.  I will go back to the dermatologist on April 3 with more questions.  Usually get no answers though.

I appreciate this site so much.  Ladies that understand how I feel is so important.  Hugs to all. 

This disease certainly toys with our emotions, doesn’t it?  I experience both good and bad days and do my best to not let this disease define me.  I have found numerous options that make me feel better out in public.  Most of the time I wear a custom made human hair partial wig... actually called a lace topper that I attach with tape.  Other times I wear a Bella Tres topper, put it into a ponytail and throw on a baseball cap.  I also own two baseball caps that have hair attached to them, and they look great!  I live in California where women wear hats all the time, so maybe it’s a little easier and more widely accepted.  Go to headcovers.com and look at their many selections of baseball caps with hair..... better days ahead, hopefully, for all of us.  We are the pioneers for a future generation that will undoubtedly have the same concerns about FFA.  Hopefully the doctors will find a solution so others don’t have to deal with this!!!!!  

Hi again, 

it seems that the hardest part for me is not knowing how I'll look in six months, a year, etc. I look at older women and know that I will probably have an additional challenge of a wig or whatever. I too have thick hair all over but on top, and none in front. 

I love my Coke Zero! I am trying to give it up but it's really hard. I have been saying this for YEARS btw, with periods going without it, then, it just comes baaaaack  ; ) But attempting to eat now no gluten and no dairy... if I still drink that garbage does it cancel out all the healthy eating?? Uh, yes. OR maybe not...

My eyes are so dry I can barely see this screen. 

Has anyone had results with Plaquenil?  I went to my dermatologist today and she said she has patients that have seen results with it and she prescribed it for me.  Now I have to figure out if I want to try it.  

Has anyone here tried: irestore, Hairmax, Capillus or excimer laser? What were your results? If it’s effective, it seems like it might be nice to try because of the lack of negative side effects.

Just came back from a trip to Florida and was reminded again, unfortunately, of how difficult this whole thing is.  1.) Which headpiece to wear to pool -- my wigs are so hot! And don't want to ruin good ones, but don't like the old ones and how they look, etc. 2.) what do I do when staying with others as a guest in their home.  Difficulties in the morning, and can never just hang out, and feel comfortable as have to wear piece so long for the whole day and night.  Just in general feeling annoyed.  Every time I think I have a handle on this, it just gets in the way again.  I have a new human piece on order now.  Been wearing blended pieces and wigs, but they end up looking ratty too soon, even though they are much less expensive.  This has been going on for six years.  I have progressed from clip in toppers, to taped in front and clipped in back toppers, to wigs customized to fit in front and on sides, to now full wigs.  HATE this.  Lost all facial, arm and leg hair years ago.  Have tatooed eyebrows, they look pretty good.  Just always thinking about this and having to deal with it.  At least during the winter here in Chicago, I don't need to change my appearance much.  I do work out a bit, and am always anxious at the gym less one of my pieces falls off when I get up off floor, or perspire.  But basically we are indoors so much that it is easier.  It is the outdoor lifestyle that gets in the way.  Used to love summer and hot weather, but not anymore!!!

I am not on any meds, gave that all up years ago, not taking any more chances with my health. Am a breast cancer survivor.  Just needed to whine a bit.  I will get back on track I know.  And half baked, every six months is like a new beginning.  Save your $ so  you can progressively add new pieces because you will probably purchase two a year if not more.  Yikes.....on top of everything.

Hello lovely ladies, we all try to manage this as best we can. Diane, on dr Jeff Donovan’s website he has handouts on different medications including plaquenil. I have not been on this drug. You may want to get your eye doctors opinion but I think lots of people are on this drug for auto immune diseases.

Minter, glad to hear you really liked the Moo Goo shampoo & conditioner; I've been using it for 6 years now & found nothing better. Kandy15, so sorry you are having a crappy time dealing with this condition right now; it really does play havoc with our emotions & tests us to the limits; I totally get your feelings when you talk about being on the verge of tears. I know I've shed many over the past 6 &half years dealing with this ratty diease; from being told by specialists quote "NO, you do not have cicatricial alopecia or ffa", when I suggested that my symptons seemed in line with ffa/lpp from what I researched on the different types of hairloss. Sitting in the car crying my eyes out after receiving my biopsy (confirming ffa/lpp), relieved on one hand to finally have my suspicians confirmed, yet on the other hand feeling helpless in knowing this type of alopecia was permanent, often long lasting, & extremely resistant to the many treatments on offer; the frustrating lack of control many of us seem to have over the chronic symptons & seemingly endless slow progression; the many awkward situations it forces upon us. It can just become so frustratrating & even overwhelming at times;  I'm sure most on this site can relate to your feelings Kandy, & between all of us we could probably fill a swimming pool with the tears we've shed. I have a lot more periods now when I feel stronger, trying hard not to allow it to bring me down. But there's nothing wrong with having a good cry ....&   I still have those periods too. I think all of us here are brave just dealing with the challenges this condition makes us face each day, & we need to all stay as strong as we can for each other!   BIG HUGS to you Kandy & All of you lovely ladies. I would not feel as strong without all of you   xox

Jules Australia, yes-I am getting ready to order the full size bottles of shampoo/conditioner & protein shot from moogoo- I've actually been getting compliments on my hair which hasn't happened in many, many, many months! Or maybe even years!  Funny, I was just thinking now my hair stuff will all be from Australia, I use boost n blend and now moo goo, you guys don't mess around when it comes to hair products haha! 

Seriously though, guys this FFA is a killer to the confidence.  I'm now starting to do more 'outdoor' stuff as it is warming up and it is back to omg, where is the sun, is it glaring onto my thinning head- which way is the wind blowing- where is my hat- I hate it.  I hate how this rules my life and having to make decisions on what/where I will go or do or even how I will live my life based on my HAIR of all things.  It is not like I am ill, or weak or dying, it is because of stupid hair and that is what makes this disease so very, very frustrating.  I was at my workout class at the gym last night which is a really hard workout where we all walk out dripping in sweat, and I just think- wow, how much longer can I do this before I can no longer do it because of my HAIR.  It is not a thing where I can wear a baseball cap or anything either.  I've said it before, I sometimes wish it would just all fall out at once instead of the slow, insidious, torturous way it has of progressing.  It would almost make it easier to deal with instead of this thinning mess I have to deal with every day.  Ok, sorry rant over! 

It's amazing how many comments made on this site are SAME as what comes straight from my own thoughts or even things I have actually expressed out loud to those close to me when I try to explain what it can be like living with FFA/LPP. Minter, I remember saying same to my sister a while ago ...."I think it would be easier if the hair just all fell out, rather than putting up with the horrible haunting scalp feelings (waxing & waning),wierd deterioration of quality & watching it slowly but surely move back off my face, trying to hide the loss with the continual ongoing changes". Then the decision to get a freedom wig (which can be worn swimming, to yoga, exercising, whatever, ...hang upside down on monkey bars if you feel the urge), as you have to have no hair to  wear one of those" ..... no more fiddling around trying to cover or disguise the ever expanding forehead/hairline. Yes i'm sure it would be a shock at first, if it happened that way, but after going thru this, there would be no more humming & harring over what do I do nxt, how far do I let it go before going down 'helper hair' option, so on & so on!!! And  not to mention the problem of extra sweating when exercising, or even just in the hot, hot humid weather (which we've just gone through here in our Auzzie land, summer which seem to be getting hotter & lasting longer each year)....... sorry, over & out,  that's my 'ranting & raving' done for now!!!!!

PS Minter, I had not heard of boost n blend,..... just looked it up on their website & sounds good....am going to order gift pack & try it, thanks for the tip!! :-)

Yes, Ditto Jules! You said it exactly the way I feel!  If it all fell out and I was as bald as a bowling ball, it would be (I think) a million times easier to deal with then this slow creeping half full hair half thin hair mess of FFA.  

Yay for trying Boost n Blend, I love it, hope it works as well for you!  Turns out I did lie about everything for my hair now coming from Australia as I realized that the hair fiber powder I use in front of my ears is made by Revolution which is actually a British cosmetic company-it holds up really well and it is cheaper then Boost n Blend so I keep the Boost n Blend for the top of my head and Revolution for the sides ;-D 

Thank you all for venting about the good and bad hair days. I recently had 2 weeks of feeling horrendous and hideous. I went and got my hair cut and colored (in a new way) and that weekend a lady complimented me on my cute pixie cut. I floated on air it made me feel so good. Then, I caught a cold and my face broke out like rosacea but bumpy. The chicken skin, basketball skin texture is red all over the right side of my face and halfway across my left side too. I have no idea why. It's improving but god knows why it happened. I wanted to put a paper bag over my head and hide. Good feeling gone and it's back to my hermit ways. Ugh!

(((Hugs to all!)))

Has anyone used Toppik hair building fibers? It's available in stores in USA, similar to boost and blend.

Doesn't it feel great to get a compliment about our hair!  It happens so seldom that when it does occur, it really does feel like floating in a little cloud of happiness after receiving the nice words :-) 

I'm sorry you got a cold, hope you are feeling better soon and haha, hermit ways- yes!  I can relate to that & sometimes I quite enjoy my own hermit ways nowadays!  

Anonymous, I've never tried Toppik- I've read about it, but I guess because I've been using boost n blend for quite a while now and know it works I don't want to take a chance on anything else-

in other words, I'm being cheap and set in my ways ! I don't want to spend $$ on something different even if it might be better ;-D 

Anonymous, people have good results with Toppick so I recommend it. The trick is to get the right color so you may want to order a small size first. The colors may run darker than you would think.  Basically you use any medication (like clobetosol first), then style your hair and then shake on Toppick. Kind of like shaking a spice shaker on your head or grated cheese. Quick and easy and it does make the bald spots in your head disappear. Or wide parts disappear. You would not use it for your forehead area where we lost hair. I have bangs to cover that area and am going to try some shaded eyeshadow to blend with my hair color for the forehead area.

you can order Toppick online and Sally,s beauty carries Toppick but my local Sally’s did not have all the colors. I ordered online. There are also videos online of how to apply Toppick.

hope this helps and have a wonderful day!

Thank you Toby and Minter for responding to my question. It's nice to get feedback on products.

Yes, that is the same way I use boost n blend- like a salt shaker on the top of my head where the part is or where it is thinning-

I use the Revolution root cover up powder with a brush in front of my ears and usually blend the light and dark browns (depending on how far along it is until my next hair color appointment) and nowadays I have to also take the brush and go along the hairline at my forehead blending it all in and pushing it in about an inch or so to the hairline, seems to look okay and not noticeable at all when I do that.  I sometimes use my brow powder to blend in along the hairline as well. I've gotten pretty good at it so it really takes no time at all!

Thank you Minter, I will check out the Revolution product as I am not familiar with it.  

Go girls, thanks for all the practical tips there fantastic.

Hi Kandy15,

I have just read your comment and I am so sorry for you. You are not alone when it comes to depression, fear, anxiety, I feel exactly like you. I was diagnosed three years ago and since then I have been on Plaquenil, Finasteride and lately Methotrexate, a strong immune suppressive drug. I thought for a short while that Methotrexate really halted the progression - but no. It seems that nothing helps. My depression is so deep that I need sleeping pills every night and antidepressives every day, I am a real drug addict. The antidepressives helps for the panic  attacks but not against the deep depression. For the third time I have tried to consult a counceler - a women in my age (70) who really don´t understand what I am going through, she strongly believes that my depression is an age issue BUT I keep telling her that I have no problem with my aging process, I think I am quite fit to be and old lady and that everyone has to go through that BUT it is not normal to loose your hair and to have a hurting scalp. The ignorance around us is the worst thing to cope with. I have the same experience with the staff in the wig shops. They really don´t care - they will just sell a hair piece.

You live in Florida and I have a summer house near long beautiful beeches and this year I don´t want to go there and  I don´t want to have visitors in the house. This is really an awful condition. We all miss our old selfs

Hugs from Louise

Anyone in central Florida area who would like to get together to talk, I’m available. I’m in between Tampa and Orlando and happy to be a caring friend. 

She is a caring friend. I took her up on that! Thank you so much CurlyK. 

Louise,

Thank you for validating my feelings,  I know that so many of us feel the same way. Many days I feel as if there is a rock tied around my heart. The only way for me to really sleep is to take sleeping pills too. I use 1/2 of a Unisom and sometimes it helps, sometimes not. I went to see my dermatologist this morning - beautiful lady with beautiful hair - and she let me know again that there is no cure.  I realize that but I would like for the progression to stop where it is and go no further.  She continued me on Plaquenil. I've been taking it for just 3 months with no improvement.  I tried finasteride before and it made my scalp burn like crazy.  She told me to try again but only with a half of a dose to see if I can take it without side effects.  She also suggested PRP injection therapy.  I'm doing some research on that.  All I can see is that it may help with alopecia but not the scarring kind we have.  There are clinical studies going on to see if it could possibly help with LPP or FFA.  Plus it's crazy expensive.  I still have redness, scaling, hair loss at the forehead - very active disease.  I want it so badly to STOP!!

I live in northwest Florida - Destin/Ft. Walton Beach - and have had calls from family that say they are coming this summer regardless of how I feel.  The only one who has been compassionate has been my daughter.  She said she and her family did not want to cause me any more emotional stress with being around people, plus the going and doing and babysitting for my grandkids.  I still work so I try to style my hair with the least bit of scalp showing with the high forehead using bangs.  I always am very self conscious about others looking at my really bad hair.  Can't wait to retire and hide out all day in my house. 

CurlyK, I wish I was closer to Tampa/Orlando because I would come see you.

Hugs to all!     

Kandy15, i live in Jacksonville, Florida. How happy are you with your dermatologist?  I have a dermatologist who has made a world of difference for me over the past year. My dermatologist is in St Augustine Florida. If interested, you would probably need to go to see her every 3-4 weeks. Not sure if that is doable for you. I get kenalog injections every 3-4 weeks and we are gradually increasing the timeframe in between. I am on fenestaride which she gives great credit to. At my worse about last summer, she put me on pregnisone for 20 days. That is when my condition turned around from out of control to manageable. I take 1000 mg of Vitamin b12 and 5000 mg of vitamin D which I was deficient in both. On of them, either low vitamin D or B12 is also instrumental in depression. I also take slow release iron with orange juice every 2-3 days. Since I started the iron, hair has regrown on my legs and now surprisingly I need to shave my legs sometimes. I hate to think where I would be now if I had not found my dermatologist. She has Meade a Hugh difference in my life. Please let me know if you would like her contact info. All the best.

Toby I would like the name of your Dermatologist. I live in Jupiter FL which if a bit of a drive but it would be nice to consult with her. 

Certainly, her name is Dr Joanna McGetrick at Premier Dermatology of Florida.  The address is 1201 Arapaho Ave St Augustine, Fl. The office phone number is 904 460-2388. 

She he is very kind and gentle and really knows her stuff. She told me she is now seeing approx 1 person per day that has FFA. She is really at the front line with understanding what we know about this disease.  I highly recommend her.

If you like, let me know if you come up to St Augustine. I am about 30 minutes north. There are a lot of good restaurants and perhaps we could meet for lunch or dinner.

Best of luck.

PBsunshine, if you do make an appt, please tell her Cheryl sent you (my real name).  Good luck!

wow one person a day with FFA - and the FB group has new people every day freshly diagnosed. 

Today is one of those days I'm staring at my neck (which is actually now my under-chin-neck, as in it's becoming one entire piece unto itself). So if you'd like to join me in obsessing about another part of your anatomy just for a change, then look up all the (very expensive and odd) options available to lift up said chin-neck, I invite you to come along for the ride. Now I have to stop touching my neck. Damn those mirrors in Sephora. But at least I smell lovely after passing the perfumes. 

Happy Thursday. 

Toby,

Thanks for the vital information about the treatment plan that your dermatologist has been doing for you.  St. Augustine is 6 hours away from me so I wouldn't be able to make that trip as often as would be necessary.  My dermatologist in my small town is a PA but the main office is in another town about 45 minutes away. That's where she recommended I go for the PRP injections.  I think I will go back to see her and ask about the kenalog injections. I will do some research on that as I have never heard about that before.  I also have an appointment for a complete blood count panel with my regular doctor on April 11.  I am going to have them check all of my vitamin levels to see what I need as far as supplements go.

It's so crazy that so many women have been diagnosed with this stupid condition.  I had never heard about it until I was given the bad news 3 years ago.  Even then, I didn't understand what it was and how horribly it would impact my life.  It wasn't until I started googling it that I realized just what the effects could be and I cried and cried.  Still cry on my bad days but I'm trying to deal with it and go about each day like normal - whatever that is now. 

I appreciate this forum and all of the wonderful women who understand and the outpouring of support.  I'm not on Facebook so I check in here pretty often. 

I've been finding myself pulling my hair back and envisioning myself with a shaved head lately- as I've noticed that after my last haircut my hairline has receded even more and it is also starting to just feel a lot thinner.  Starting to realize that the inevitable is starting to happen.

Maybe I'll look like the Alpha character on the Walking Dead!

Minter, I am so sorry to hear that.  This is the most distressing condition.  I find myself thinking that if I wake up and my hair is mostly gone, then I would be forced to move forward towards getting bonded hair.  I keep trying so hard to keep what I have but there are days when I can't stand to look at myself in the mirror.  

I hate this for all of us who are effected with this crappy crap.  I am so very hopeful for a miracle cure or something that will just stop the recession in it's tracks.  It's just the "not knowing" what our future holds that is so difficult and won't let us live a normal life.  

Hugs to you Minter.

Thank you so much Kandy,  I have a scar (from when I was a kid) that "used to be" right at my hairline so I can very easily see how far back my hair has receded, its about a 1.5 inches back now from an already high forehead and definitely thinner at the hairline.  I do get really sad sometimes about it, not so much about losing it, but more what I will lose after it is gone- things I really enjoy doing that I will feel uncomfortable or embarrassed about once the hair is gone & I'll either have to wear a wig or a shaved head.  

If I was a younger version of myself, maybe I would feel more confident and rock all sorts of different wigs and or be bald and proud- but now I am will just be a weird middle aged lady with no hair and a saggy neck, ugh.  Though I guess with the money I'd save from the hair salon I can get some botox treatments to firm everything up- yay so there is a plus haha.

Ladies, any weird things happening to your skin lately? I am getting deep broken capillaries that are always red. I have a prominent one now on my chin. My right cheek is slightly flushed all the time. I can cover it with make up if you don’t look close.

The strangest thing is that I have developed a dent about 1.5 inches long from the middle of my left eyebrow upward. It’s not a frown line, feels different and I don’t have a similar mark on my right side. The dent corresponds with the spot on my brow that is badly scared. The microblading there didn’t take very well and eyebrow powder/pencil barely sticks.

I swear. Every week it’s something new and it’s never good.

(((Hugs to everyone)))

Minter, I have lost about the same amount as you  have from the front, around 4cm {ab. one & half inches, maybe a little more}. I have naturally curly hair which has so far helped, to a degree,  cover the loss especially above, in front & behind my ears, but I hate the missing hair in front on forehead. Kandy15, I also often avoid looking in mirror these days. Illustr8r, lately I have had spots on my forehead just above right eyebrow, and my left eyelid that have felt hot & reddish looking; it is just so weird, I am soooo sick of living with this disease, just seems to be one thing after another, ….relentless...….when will it END ????!!!!

Jules Australia, same- I can pretty easily disguise the hairless around the ears, but the hairline in front is a becoming more and more difficult :-(  and yes, again same! I very rarely look in the mirror when passing by one these days except to get ready for the day.  

It is easier to live in denial!  

illustr8r, I think I'm so used to having bad skin I'm not noticing anything different, though it is also difficult to tell what is because of FFA or what is flaring up because of menopause :-/  

edit to say hair LOSS not hairless - though it is pretty much the same thing!

I have noticed over the past few weeks that I have a few spots on my legs and arms that are little patches of what looks like ringworm. My sister has psoriasis so I asked if this is how it started for her.  She said no but that she gets those little weird spots too and after a few weeks they just disappear.  I'm hoping that will be the case for me.  I sure don't want anything else to contend with and obsess about. 

My sisters and I went to a strawberry festival yesterday so of course I had to check out all of the hundreds of women there to see what their hairline looks like.  Many my age had bangs so I don't know if they are trying to hide hair loss like me or if that is just the standard old lady (61) year old  accepted hair style.  Most had really good looking hair though.  Not the mess I have.

I have been thinking about PRP or kenalog injections but I think I am too scared.  My dermatologist said some people have good success with it but when I read posts from women who have had them, it doesn't seem to make a difference in the FFA and it has caused dents in their head.     

I hate this disease.  It's a robber of self confidence, self-esteem and joy.    

Hello illustr8r,

I have a dent that runs along my eyebrow, the outer third of it.  I had a dent in the other eyebrow long ago when I opened a car door into my face and cut my skin, but that dent has become worse over time.  Then a few years ago I noticed a matching dent on the other side.  My dermatologist said it was normal for FFA patients to get some atrophy around the eyebrow region, could it be that?  So for me I not only have lost most of my eyebrows, but also have a bit of atrophy.  It is pretty wild to keep finding fun little facts of what may happen with FFA.  I though losing the hair around the hairline was bad enough and laugh to find myself wishing that that was the only thing I would have to deal with.  The skin changes, loss of eyebrows/eyelashes etc keeps a person on their toes for sure wondering when will the craziness stop!

Jules Australia, Minter

Same story here, about 4-5cm loss at front hairline, behind ears one side and going on the other No eyebrows. I'm told I hide it well, but not in my opinion. I have  a very thin fringe starting WAAAAAY back on my head that I think is beginning to look like a man's "comb over", but forwards. I always had extremely thin, straight hair (even as a young women, hairdressers would comment) so there's not much I can do as it just gets thinner and thinner. Like you, I don't look in mirrors and am horrified if I see a photo. Five years in and no sign of the "burn out" I was told would happen!

It is a very depressing disease. However, I keep telling myself: It doesn't hurt (much!) and won't kill me.