Hello everyone. I just joined the group. I have FFA. I have lost hair at the front hairline and sides, and arm hair. Trying to deal with this.

I think the leading train of thought among doctors is that FFA is caused by makeUp, sunscreen moisturizer. Must be the chemicals in these ingredients. Maybe hair products as well. And maybe this triggers a gene so when we stop the makeUp etc the condition still does not go away. 

All of us had favorite make up, moisturizer, sunscreen that we used for years. I am going to take a photo of all the ingredients in my old favorite products that I used to use and take it to my doctor. If they could find the chemical, they would be closer to a solution. 

Great to find a group like this to connect with people that also have this. I never heard of this before I was diagnosed and then I tried to read as much info as I could.  Great you guys are out there!

A message for Fifo now living in Spain and prescribed Avodart.  I also took Avodart (male medication)  for approx 5 months and while I believe it may have been the reason I now experience burnout suggest you seak a 2nd dermatologist advice.  My demo phoned to have me stop taking immediately as there were cases in Melbourne Australia were 3 women experienced clitosis growth and their voices had become deeper (male like), this is non reservisable. 

I am sure your dermatologist is able to find court records.

Good luck.

PS I don't use this site, replying to an email received.

Hi I hope you don’t mind me asking for your collective advice...

im going to have once last attempt at stalling this wretched ffa/llp.  One year post diagnosis and one year of clobestal scalp solution & 10 months of hydroxychloroquine to no avail.  Shall I plump for doxycycline?  I haven’t tried it because of possible associated side effects and it would mean no sunshine or alcohol?? How very miserable although I’d do it if it would help?! 

Minoxidil?  Again side effects & some suggest more loss with?? 

Intralesional steroids?? Only tried one round as soooo painful...maybe I could be brave? 

I bought a wig some time ago to ‘deter’ hair loss haha! It’s way to ‘wiggy’!  Next step hair replacement system then forget about it?? 

Or anti inflammatory diet? 

Any ideas gratefully accepted. 

I agree with what Toby said maybe it has something to do with the products we used I used a lot of foundations and powders. I used a Avon foundation and powder for a very longtime and also olay spf face cream need to look into ingredients. I was wondering if a scalp biopsy gave anyone a scar ? That’s one reason why I’m hesitant to do it. Also what are some good coping mechanisms lately I’m very depressed I can’t stand my hair I’ve been thinking really negative I have a lot of worries due to my hair continueing to fall out at hairline and me being so young. If there is any other people in the ages 20-30 that have it I’m very interested in knowing your story or even someone who got it when they were that age. I can’t take any of the pills due to me being premenopausal I choose not to do injections on my scalp I think my last option is the clobestal and to change my diet I haven’t even had any appetite or desire to anything since this. 

To the person named Afraid I am also so scared your not alone.. so clobestal didn’t do anything for you ?? How often did u use it and minoxidil can’t hurt just don’t think  u can grow the hair that’s gone I been getting small baby hairs everywhere else with it just be careful not to get it on your face like cheeks forehead .. it also works for eyebrows.. heard bad things about the shot never a good outcome that I have heard. Also what’s hair replacement ?

Thanks for taking the time to reply Rose.  I used clobestal 2x day for 10/11 months.  It may have reduced the itching sensation but not hair shedding or progression of hair loss.  The type of hair replacement I am considering is a bespoke human hair piece fitted  semi permanently.  A huge step but Better than the alternative..... 

Hello all- I haven't posted in awhile but I'm right there with all of you in the struggle with this awful disease. For me the itching has reared it's ugly head again. My scalp is driving me crazy but also my eyebrows (whats left of the them), the back of my neck but the worst is my eyes. . .I feel like the burning and itching in my eyes is related to all of this? Love to hear any ideas for things that help . .

Hi AnnieMay

I have lost all my eyebrows and now my eyelashes are falling out. I have been diagnosed with Shjrons part of that is dry eye. :(

At this point I do believe it is connected

Halfbakedwho - you can cut small pieces from a wig or hairpiece and stick them to scarred areas.  Davlyn Tape or ProTouch glue from HairDirect.com work well and can last awhile.  

Hey thank you ! Yes it’s looking like I am going to have to do something soon. It’s just going to be hard to « fit » my poodle-consistency hair.

Part of me wants to go back to straightening it, but the doctor said not to do that. I’ll write more later 

am in a traffic jam !!!!

@Erika B, just click on  "+ Add a Discussion" link right above the comment wall and you'll be taken to a new screen where you add the thread title (discussion title) and that's it :)

What a cliffhanger, Erika B. Almost too exciting ;) Hope you soon have the time to share the “great medical news” with us all. I’m sure I’m not the only one who is curious to read your post:) What ever it is, so cool you feel like sharing it. :)

I'm so fickle...I have a good stretch of decent hair days...and when I don't I come back to the boards! Seriously though, I haven't posted recently but I still read things almost daily.

Anyhoo- caught a cold/flu. I guess my immune system was down and so it's triggered a mild flare with red pimples at my widows peak and a painful area in the same spot. Things have been sooo good for a while that I had even stopped worrying so much about my hair. Now, I guess its time to break out the Clobetasol again. UGH. So friggin' frustrating.

Fickle hair, moi aussi moi aussi. 

I have a bald patch forming RIGHT ON TOP OF MY FOREHEAD in a very visible spot, with the lovely red dots to accompany it. I saw on the FB group page something about vitamin D - is that the news Erika? I want to look into that definitely. I am going back to Paris at the end of the month to see another (yet another) specialist who will do a biopsy though I'm not sure why exactly. the Dr Famous-Man (he of the hair-follicle trophy on his desk) just wasn't that nice - and it was an expensive visit for very little help. The nicer lady said her colleague that I will be seeing now is more specialized than she. So... there you go. I have my freak-out worry times, and other "I-don't-care" denial times. Depends a lot on the time of day as well. Nights are not good. Some days not good too. Working helps. voilà. 

I think fickle is yet another coping mechanism and dealing with hair loss needs plenty of survival tips. 

Much the the same as illustrated & HBW..., I read site avidly but don’t post too much.  I’ve come to conclusion nothing really works but whilst trying a new intervention it gives you some hope that it might be successful.  I plucked up courage to go to a salon which I’ve been following on Instagram and whilst their main line of work is clearly hair extensions they have referred to some cases of alopecia.... it took me ages to summon courage to ring for an appointment, have been quite hopeful and happy... went in today... the person who I made appointment with doesn’t work on Thursdays!!  Do any hair ‘practitioners’ have any true understanding of how we feel?!  Crikey what doesn’t kill us makes us stronger! 

rant over 

Hi Erika:  thanks so much for sharing this.  I will try it!!!

Maria

Yep, spending my waking hours focused on the top and sides of my head wondering if every itch or tingle is real or imagined. Is h*ll going to unleash again just as I’ve reluctantly accepted my short pixie self?

I swear...Stupid Disease!!! 

illustr8r- I'm right there with you. I'm going through a rough time too. When I can feel those strange sensations and itching it's devastating because I know what's to come. This has changed me and I hate it . . .

@AnnieMay (((hugs for you)))

I hold so much jealousy of the ladies I know who have managed to get through menopause with their hair intact. I hate the ads I see on Facebook advertising the hairstyles for Fall 2018. Yeah, not an option anymore. I know everyone at my age (54) have their own health challenges in some way but ours is so front facing, weird and misunderstood it adds to the frustration and sadness. I’m happy to know I can come here to vent and be mad/sad about THIS.

Night 2 of Clobetasol. Ugh.

Erika B,

is it just me?  I can’t read your post because the font is bigger and the right side of your post is cut off.   

I can’t read rhs either 

Hugs back to you illustr8r and everyone here. I do my best to stay positive and count my blessings as I know people struggling with more serious health issues. Everyday dealing with this is a challenge but there are some days when I feel so sad and down. No one understands that this is much bigger than a little hair loss so I'm thankful to have all of you. I think we all need a place to vent once in awhile. It's a beautiful day here so onward for now 

Quick question to you lovely ladies...

anyone find overall thinning of hair and daily shedding with FFA in addition to loss at temples, side and front area?  Will it keep going until there isn’t anything left? 

@Afraid With my big flare I’d say I lost about 30%+ of my hair overall . The sides and temples have receded the most-2.5 cm. I grew back some hair on the sides and top so my bangs aren’t so stringy. This was the combo of Clobetasol and Castor Oil. I’m always losing hair-I see it in the sink and shower but it’s a lot less than it was when the flare was happening. 

Ive had a minor hiccup recently (red dots at my widows peak and itchiness on my neck) but it’s very mild compared to what as happening before. I feel relatively stable but sadly that can always change and no one knows why.

Thanks so much for taking the time to reply @ illustr8r

It’s good to know some hair grew back with clobestal and castor and that it’s hopefully stable Other than a slight flare...that’s very reassuring.

I guess I look on the internet and only see worst case scenarios and don’t know the time scale.  One year or so post diagnosis I am in a better place, I still can’t accept it.,still fearful and scared of what’s ahead but I have learned to seize the day and be thankful I’ve not got a terminal disease and my family are well and hair wise my mantra is ...this is the best it’s going to be.  I still hope by some miracle it will stop. 

It’s so difficult to know what to do next, it takes 6 weeks or so for a wig or hair piece.... sometimes you simply can’t imagine how it will look in 6 weeks... 

Im so grateful for your reply, thank you so much xx  

wishing everyone hope and strength to overcome or manage this condition and it’s effect on our lives 

So my friends, am going to see a new specialist in Paris at the end of the month. Apparently, he prescribes Dustasteride. Side effects possible - trouble urinating, swelling of the face, breast pain... 

BUT apparently, it stops the progression of hair loss in 7 out of 10 cases, according to him. 

I feel like this is a real dilemma. I have definitely had more hair loss over the fall. I would, of course, love to stop it. But I don't know if it's worth it. I am feeling okay these days, if overworked, and though my hair is not great and it's hard to style, I don't think I'm willing to take this medicine. I sort of wonder why I'm going to consult him, but I think it's to feel like I'm doing SOMETHING at least, instead of watching my hair leave my head, passively...

I had stopped using the email where I was getting updates on this board but I just switched it so now I hope to be back here chatting hair follicle fun with all my balding buddies. Please take that well my sweets ; )

Half baked - 

This Balding Buddy appreciates your humor.  Glad you are back.  

I have been taking Plaquenil generic version for 3 months now and had a check up yesterday.  My doc sees a lot less redness & bumps and there seems to be some new growth.   I take 400 mg a day.  Does anyone take a higher dose than that?   If this is working, I would like to up my dosage.    My doc has required bloodwork every month & vision  tests to make sure my body is tolerating the meds.   All appears to be okay. 

Definetly noticing more hair loss on the top of my head. I will be calling Any Davray (hair people) to see what one can do for me - it seems the hardest thing (I repeat myself) is the very curly hair. There’s a picture up on the FFA FB page of a woman who just got new hair - I am at the same place she was before she decided to get her hair. With the curls I am hiding the loss but it’s getting harder to do on top. If I’m feeling brave I will give you a picture - if you have advice (again it’s because of the kind of hair I have) please share.

@Halfbakedwho- my hairline looks very similar to yours, except you have that wonderful thick curly hair-love it!  

I wish I had some new, great, advice to give you-but I have none, other then using powders and makeup to help make the loss look less noticeable which is where I am at now even though I went to Lucinda Ellery last year for helper hair and what they did looked great and natural, but I couldn't handle having it on my head (they used the intralace system and added bangs and side pieces).  

I'm sorry that is all I've got, but I really hope all goes well with your consultation!

Halfbakedwho-I wish I had some ideas as well but I have the total opposite problem with thin fine hair.(I've always had thick hair until now) The top of my hairline looks similar to yours but I have more loss now on the sides above my temples making it almost impossible to hide with my ever thinning wispy bangs. My hairdresser has to keep going further back to find any bangs.

Minter-I've also thought about the interlace system but my scalp is so sensitive that I can't imagine having it on my head either. 

I wish I had something positive to share. Good luck with your consultation!

well, thank you guys anyway! I don't know if it's comforting or distressing to know that my hair looks like your hair  : / - I suppose it means I'm in the right place, not that I had any doubt about that. My doctor consult is next week, and apparently, he will do a biopsy. Frankly, I have other fish to fry - I can't worry about my lousy scalp - but worry I do anyway. I sound more cavalier than I actually feel. 

I don't like the way headbands look - to me it looks like there's something to hide. It just seems to me I've lost quite a bit of hair since last June or so - it's probably just a centimeter but that's a lot at this point... 

Merci everyone. 

@HalfBakedWho Gosh girl you have so much hair! I’m envious! I’m like AnnieMay-fine hair. I used to have lots more of it and could rock a shiny bouncy bob like nobody’s business. Now, I’ve lost so much volume and my super short pixie looks almost slicked down because it’s just...there. My front hair line looks like yours. I think my right side is receding to match my left. Not fast, but it’s going. Dammit.

@halfbakedwho  I agree with everyone...i love your hair! Individual hair loss is highly relevant though as we are the only ones who can truly see how much we have lost.  I think during initial stages that’s why it’s hard for dermos to take us seriously.  Like Illustr8r & Annie May I had masses of thick hair (too much in fact) and now it’s fine and disappearing fast (hairline, temples, sides, around ears and nape) my ears have always been nicely and wisely hidden (they stick out!) they now poke through my thinning hair it will be impossible for me to sport a pixie look. 

I agree though In terms of regular hair systems most are straight.  I wonder if more bespoke services would be able to create a permanent wave? 

Minter I think I remember last year you said you couldn’t bear the intralace  on your head... how long did you manage to stick with it?  Does your condition need to be stable before intralace? 

Love to all you ladies x 

Windy autumnal day out there!! Hurrah though soon be winter and I can hide underneath a hat!!!!!!!!!

@Afraid I hear ya about ears! I inherited my Dad’s not petite and not so pretty ears that are a bit big and stick out. I decided if I have embrace a short hairstyle that looks intentional to hide my hair loss I’ll do it. So, there are the ears for the world to see. I bought a gold ear cuff to “decorate” one ear. I do grow tired of making the best of a bad situation.

I called yesterday for an appointment at a hair/wig place and explained my situation. Apparently, they will make a custom thing for me with the curl.

Yes, it looks like I have a lot of hair because it is a lot of hair - but the thinning on top is getting harder to disguise because it's incongruent with the big mass.

She asked me over the phone if the hair loss had slowed down, and I said no - not at all. I suppose this is an important consideration given the price of these custom hairpieces - that maybe a centimeter or two of difference will cost me a whole new hairpiece? Dunno.

Stay tuned for the next episode of Follicle Follies (in France!) with me, your hostess, Half-hairless-head. But yeah, a lot of hair - there's that ; )

@Afraid, I lasted only about a month with my system- I LOVED the way it looked, but being someone who doesn't even like to wear a hat, having it on my head 24/7 drove me bonkers and that is the only reason I had to have it gone.  I was getting so many compliments and it was great seeing myself in the mirror instead of looking away which what I do now when I pass a mirror out in the world :-(  anyway, I would definitely recommend you give them a call or email, they are very helpful & patient and can & will pretty much answer any questions you have, good luck if you go with L.E!  

Hi everyone.  I ordered my system about 3 months ago and it should be waiting for me when I return from vacation.  It’s a big investment and I certainly hope I’m not bothered by it.  I’m looking forward to looking in the mirror and not seeing the 6 inch forehead that is so prominent to me.  My friends say they don’t notice it, but it’s all I see when I Iook in the mirror.  My hair has also thinned at the crown, but i think that’s just age and not related to FFA.  I will post pictures after I get the system in early November, and let you know how it feels.  

@Bloomingdalekid Wow this is very exciting!  Can't wait to see the photos :-)  

Ah how grateful I am to you all! Thank you for your inspiring stories and strategies :-) x

Well I'm going to have a new system on Sunday. I'm excited and a little apprehensive. The one I'm wearing now will be 3 years old in December so it's time to have it redone :) 

Hi Liz

that sounds exciting although a little daunting I expect.  How have you found wearing your current system?  Was it from a particular salon?

Did you go to the conference in London in September?  Was it useful in any way? 

Hi Liz - I too am curious - you had one system that you would have re-bonded over your three-year period? Last year, I consulted at a salon where the woman said I'd need to have two hair pieces made - maybe this isn't necessary?

I will be consulting tomorrow at the same chain of salons but in my town - not the same store. I don't want to be upsold. The other issue - I'm understanding better how this all works - it takes a few months to create the hairpiece? In that case, it's a bit of a roll of the dice - right now I can hide the hair loss, but again I've noticed that I've lost a good bit on top this fall. I have to somehow predict or be able to foresee what the next 3-6 months will look like. The lady over the phone said it's good to make the appointment now to not be in a "situation d'urgence" - in French, "an urgent situation" in a few months. Wow - be a bit ominous why not...! Let's freak you out, and threaten you with looking like a freak... order the system NOW. It's sort of like if you don't take your umbrella you are asking for a downpour. 

I'll let you know how it goes... and listen to your experiences...

The salon I used told me up front that there was a 3 month waiting period due to demand of the type if hair that was being ordered.  I guess there are only a few places in the United States that are used.  She uses someplace in Florida, I believe.  Anyway, I was told to order 2 systems and that each would last about 6 months.  From those I have seen on this site, they vary from 2 - 3 years, so I will wait and see if I really need to order a new one.  She told me that it’s always good to have the spare on hand in case there is a tear in the lace cap, which is unrepairable?  So much to learn.  I am in Fiji right now and the “band” around my forehead got a little too much sun today.... ugh.  

Hi ladies! I’m the gal in Florida who goes to Custom Hair Tampa Bay for bonded hairpieces. I had my hair “done” last week where they take the piece off and clean it and my scalp and reapply with new tape and glue. While I was sitting waiting for the clean piece to come back in, I measured how far back my hair loss went. I can put a full five fingers from my former natural hairline back to wear the hair still grows. So, a tremendous amount of loss for me. My hair piece is the only option I have and I’m so grateful for it! 

Curly, how many years ago did you get FFA and when were you diagnosed?   Did you ever take Plaquenil?

It’s so hard for me to know when it actually started. I believe my hysterectomy in 2008 kicked it into motion. I started noticing it receding in 2012-2013. Really figured out something was wrong in 2015 and diagnosed in 2016. By then the loss was so great on the top and front I was wearing scarves. Never took any medicine as the loss had already mostly happened and I don’t like the side effects. I have some itching - just enough to be annoying at times - but no great side effects other than the loss of hair. 

Thank you so much for your information.   You are probably one of the pioneers of this creepy affliction.   I cannot help but feel there are  more and more of us joining the ranks.    

Creepy Affliction. That could be my next screen name, BubbaLu. 

Last Friday I went to see a lovely nice woman who told me that since I have this crazy hair, it hides my loss, for the moment, more than if I had « normal » hair. So good for me, after years of cursing this hair, I am lucky to have it. She was like a really nice mom, and spent a lot of time with me, assuring me that my hair too could be matched for a bonded hair piece if need be. Yay! Then she chastized me (nicely) for touching and looking too much at my scalp « laissez votre cuir chevelu tranquille ! » says she. She also says « dont use powder on a sensitive scalp! » So just FYI - I was thinking of using powder b/c of the obvious thinning on top. I don’t know if you’ve heard that same advice? 

In other news, I was in Paris today to see my final (third) specialist who apparently is the Specialist of Specialists. I was supposed to get a biopsy, but he took one look at me and said « why give yourself another scar, it’s obvious you have an « alopécie fibrosante frontale ». So that was good - no biopsy. But he is throwing the book of all the meds at me. Ouch - heavy book. 

if you’re up to translating this with your anglo-Google, knock yourself out, but they are not hard to understand even in French. 

Med 1 - GRANUDOXY 100mg. - a type of low-dose anti-inflammatory antibiotic

Med 2- Finasteride 5 mg - I don’t know if I want to take this (!!!)

Med 3 - Clobex Shampoo - basically Clobéstasol shampoo that I put on my hair (dry!) and leave on for 15 minutes before rinsing. Fun times. 

Med 4 - Clobéstasol to put on my scalp. 

Could you share your experience of Finasteride? He says the goal is to keep my hair on my head, and stop the loss in its tracks, now. I am of course all for that - I am even wondering how I have wasted 18 months on these other regimens - however as we all know nothing really works all that well, if at all... n’est-ce pas... 

My consult took all of ten minutes. He measured my hair loss at 2-3 cm, spat out the prescription sheet, and voilà! I guess it’s better to not be too interesting a case though, right... : / ??

For any of you who are in France, this was Dr Pascal REYGAGNE at the Clinique Sabouraud à Paris. Google him, he’s a big famous hair-man too. Good for him. 

At least my Paris venture brought me to the American épicerie where they have fireballs and candy corn, so I am okay tonight.

Happy Halloween. 

Very luckily I've never had any itching or irritation from using powders to hide the loss/dull the shiny scalp along with my new favorite which is dry shampoo to pump up the volume!  

Your hair lady sounds very knowledgeable and glad you don't have to go the helper hair route quite yet-  Good luck with your new doctor and prescriptions, I hope they help you and Happy Halloween!

I had my new hair system done on Sunday and I'm so pleased with it. It's better than the first one i had which was also lovely. This one was also less than half the price. I don't want to post pictures on here after I found  one of me on Google images after posting on here. I've am happy to message a photo to anyone who is interested in seeing the result 

Xx