@Liverette Hi Liverette, I also saw your message and was not able to find it anywhere. I too have hot flushes and sweating around my hairline! I feel that mine started after I lost a lot of hair around my temples and some around my hairline. I feel that my hair loss was originally triggered by the flu vaccine. I had a horrible case of influenza when I was 47 years old (right as I was starting to go through peri-menopause), that took me a couple of months to get over...the next year, for the first time, I got the flu vaccine and within a month, lost almost all the hair on my right temple and my left temple thinned. I didn't connect the two, until the next year, when I had another flu vaccine and then lost most of the hair on my right temple and some around my hairline. Anyway, after all this, I started getting hot flushes and lots of sweating around my temples and front hairline. I am sure it is somehow all related, but of course, I don't know exactly how. I have been to many different types of doctors (endocrinologist, immunologist, dermatologists) over the years, with lots of possible explanations, with the "best" one coming from my endocrinologist, who thinks the flu vaccine triggered the hair follicles to shut down thinking that another case of influenza was coming on and causing an autoimmune response each time I got the shot. Anyway, I guess the good news is that I have not had the flu shot now for about 10 years and there has been no additional hair loss. Nothing ever grew back, but at least it hasn’t progressed. It is definitely an odd disease and it seems like there are many different triggers. Anyway, back to your original question J, yes, I get the weird hairline sweating and hot flushes especially in humidity…but it can happen almost anytime. It’s no fun.

I have definitely had the sweating too!  Switching gears here, I'm wondering if anyone else has examined the hairs that fall out.  Mine have a very small black area -- just a dot really- at the very tip of the bulb end.  I'm sure I'm not explaining this right, but the end of the hair that attaches to the scalp, the part of the hair looks like a q-tip, at the very end it is black, where the rest of the blub area is whiteish-clear.  Anyone else?

Maddy, very interesting story about the flu shot.  And it sounds like one of the few for which scarring hair loss has "burned out"??  Congrats!  Though your remaining symptoms do not sound pleasant.

Has anyone that has been lucky enough to become inactive had surgery and if so did you medicate with anything before surgery and afterwards did you have a flare - also what kind of surgery

Does anyone suffer from tender areas on scalp or areas ridges on scalp?

Almost 8 months into use of clobestal and hydroxychloroquine and my hair shedding constantly, for example, when I touch my head, or wash my hair.  Loss around perimeter of hairline and temples continues with no signs of stopping. Losing eyebrows.  Rash on chin. 

dermatoligist recently wrote to me to say she had read the journal article I had suggested re Finasteride and said she agreed it seems to help...[i didn’t imagine I’d ever be in a position to signpost up to date information to a consultant dermatologist!!!]. However I’m now worried about taking due to side effects...linked to cancer and weight gain?? 

Do any fellow FFA/LLP sufferers continue to cope by ‘denial’ ? 

Hi afraid, yes I continue to be in the denial phase, I am drinking my 2 cups of organic spearmint tea a day, olive oil to eyebrows, and refusing medication.  I think I'm at the acceptance phase now..well till those horrid red spots appear around my frontal hair follicles again.  

Hi all- Has anyone had micro needling done? It's basically like derma rolling but deeper. The texture of my skin has changed so much with this stupid disease. The aesthetician I see suggested it and she thinks it will help but of course I worry about it. I know I had some scaring after microblading my eyebrows. After one year I need to get them redone which I'm not looking forward to. Ughhhhhhh

AnnieMay, did you mention before that you used Retin-A? I think in the notes provided about the CARF conference, Retin-A and laser treatment (I'm assuming IPL or V-beam) were recommended. I'm still exploring options myself and am curious what you've tried so far.

Hi Jess, I tried Retin A and it irritated my skin. My skin is so sensitive now. I know it can dry your skin out a lot of at first so I might give it another try and take it slower this time? 

Thanks for your reply Plf x

has anyone considered they may have coeliac disease?  Another of my denial strategies is constantly exploring alternative diagnoses!!!  

Annie May, my skin has changed so much too, I hate it! So bumpy and rough, when I was getting my brows done the tech kept commenting on how "thick" my skin is :-(  she pretty much gave up on doing the actual microblading as all the different blades she kept trying weren't going in deep enough and it was getting really painful, she decided to go for a powdery brow instead, they look great, but still...... anyway,  I tried Retin A a few years ago and ended up at Urgent Care because of a really bad reaction, severe hives and redness, itchiness, oh it was awful! Don't know if it was because of Stupid FFA or just my own sensitivity though. 

Oh one thing I have been meaning to post here, my "shiny white hairless band" at the hairline is also the bane of my existence, I HATE the shine and have tried primers, powders & even talcum powder of all things (read somewhere that is what guys sometimes use on their bald head to get rid of the shine) it does work somewhat, but adds to the paleness :-/  

I picked up Rimmel Insta Fix & Matt the other week as I had a coupon ;-D but still it was only like $6-$7 anyway, it really works! I blend it with a contour powder or bit of bronzer now as it is summer and even though I am getting a little tan on my face, of course the weird pale hairless band does not seem to really tan, which is par for the course with Stupid FFA. But the powder really hides the shine, so thought I would pass it on!

Minter - I’m glad to see your comment on the microblading. Your tech commenting on how thick your brow skin was. I just had the same experience & googled it but didnt see anything specific to eyebrows being thick skinned. My lady that did mine also commented on my brow skin being thick. It was all going smoothly kind of painless until she got to that part. I’m going back for my 1 month touch up. I hope she is able to penetrate the skin without too much pain this time. 

My skin feels so thick too. Like leather all over my face. And very mottled on the sides by my temples where my hairline is getting so thin. Makes me look so much older than I am. With our experiences with micro blading it makes me nervous to have micro needling done??

Losing hair where I want it but then I have strange little light vellus hairs showing up on my face that I don't want? on my chin, temples, upper lip?? Has anyone tried derma flash? 

I hate the shine too which is especially awful during the summer. You're right it doesn't get tan. Thank you Minter. I'll try the Rimmel Insta Fix! 

My hair is now also very thin on top and the sides and with the summer light you can really see my scalp through my hair. I've been using the Joan Rivers Great Hair Day powder and it really helps. So much work to try and feel somewhat normal everyday. Exhausting. . .

@AnnieMay, my brow tech kept asking me how old I was because of my thick skin, she was using the sharpest blades and still was going through them like crazy, sigh.  

 With your micro needling, as long as you trust your aesthetician & have talked it through with her about your skin and it's special needs thanks to stupid FFA  you should be ok I would think, maybe even do just a small bit and see how it reacts? I would love to get a procedure like that done to have smoother skin, though I am getting botox done after the summer when I am (hopefully) done sweating like a I don't know what because of this awful heat & humidity & of course the sweaty side effects of stupid FFA!!  

I haven't tried Joan Rivers great hair day, yet.. I use Boost n Blend & I am happy with it, but I read such good things about the Joan Rivers that maybe I should try it one of these days.  I also use Revolution hair powder on my sides, it stays all day and I love it.  Our morning routines are so exhausting, you are so right, I've gotten pretty good at the powders and stuff, but it would be so nice to just get up and not need to do all this "stuff" to our hair and now skin to just look normal. 

@Donna, I remember my 1 month touch up as not being that very painful.   She was ready for my skin this time though, she didn't use the blades, she used the machine as it was able to penetrate deeper and I think that helped a lot. 

Hi ladies! Be kind to yourself. Acceptance comes gradually. While I know I'm in a state of acceptance, I still have days when I wish I had a head full of my own hair instead of my hair piece. I still have days when my head itches which serves to remind me of this crazy disease.

I get my new hair piece in two weeks. I'll post a new picture once it's cut and styled. I guess you could say this is one strangely "fun" thing about wearing a hair piece. I can really change it up if I want! I've been looking at new styles to show my stylist.

Since the CARF conference, I have obtained a serum and night cream with Retin-A in it. I can already tell a difference in my skin.

Hi everyone, I haven’t posted in a while. I have been trying to take a break, to not think about it, to get on with it, etc. 

There has been more hair loss on top. Again, no one but me notices but I go through my freak-outs, like tonight, wondering how I will deal with this. Since my diagnosis last year, I have lost a good centimeter all around. It’s been hot here, so I wonder what having to wear hair will be like with the heat. IT’s also because I saw old pictures of myself on FB and they depressed me. 

I am planning a new business that will keep me in the public eye a bit. So that’s a bit initmidating, and so yuck to that. 

I again admit I haven’t been diligent nor vigilant with all the hair-crap supposedly needed to keep this at bay; next week I’m going to see my original dermatologist at the Clinique Soubouraud in Paris instead of Dr. Famous Man whom I saw in February. If you recall, Dr. FM took me off just about everything except for cortisone lotion and tetracycline. Since nothing seems to make a difference I know I just use things when I think of it. I’m not sure what I’m expecting with Dr. Less-Famous but she took a lot more time with me, which is something. Maybe it’s just a way to stay hopeful and switch things up...

Afraid - I am finding Denial not a bad Defense but it only goes so far. It works well depending on my frame of mind, the weather, and the mood of my hair too of course. I look like a woman with a receding hair-line, so... like an effeminate 50-ish man. Not to offend anyone, but maybe this is a good Trans look. Or something. Not what I’m going for in any case. 

Lastly, because of hair-trauma but not only - I am getting my filler-injections again. Expensive, but I’m saving for them. I figure, there’s more face to see, so I will try to make it look as decent as I can. 

It’s 2 in the morning and in France no AC so too hot to sleep and hot flashes besides, so thanks for listening...

Curly K, did you get the retinol treatment that was mentioned in you CARF notes?  Can't wait to see you new hairdo!

Also to those talking about the thick eyebrow skin, I know my dermatologist mentioned to me that atrophy of the eyebrow area was part of FFA. So many extra little things go along with this disease that I never realized when I first read about it!

Hi everyone.

I had micro blading on my eyebrows last year before my diagnosis. My skin is so thick I cried the whole time she was doing them. :( they looked great but the scar issue just kept peeling now they are all gone.

That is so awful that you went through the microblading and now your brows are gone- My tech had to keep switching blades as she didn't think it was going deep enough for the color to stay because of my Stupid FFA skin. 

I received an email from Bloomingdalekid but it was posted with a DoNotReply address from Alopecia World.  Did anyone else get that?

if you are out there Bloomingdalekid, I am 100% certain my FFA was triggered by the Juvaderm that is advertised to last 2 years.   Toward the end of the first year, my auto immune started attacking my cheeks and at that same time I started noticing tiny bumps along my front hairline.   

I read somewhere that a majority of women getting FFS are affluent non-smokers.  

BubbaLu - Bloomingdale kid here.  I wonder why you are getting a DoNotReply address from Alopecia World?  Thanks for your reply.  As I stated, mine started shortly after Botox.  There's not  a dermatologist in the world that would concur - it would cost them their livelihood.  

I have consulted an attorney who does not want to take on my case but I feel certain there will be a class action law suit eventually.  

Hi everyone. It’s been a while since I have posted.

I was just wondering if anyone’s disease has gone into remission/disease completed its cycle. I never went back to the dermatologist as I didn’t want to take the medication or steroid injections but I remember her saying it had a cycle, different for everyone. 

Hi Yash, good question..I don't think I have had any more hair loss for six months, nor can I afford to, eye brows have remained the same, .I am in hope that this is it..but apparently it is a very slow persistent disease

My hairline recession seems to have slowed down, but now I am losing hair at the crown.  When I shampoo I can’t believe the hair in the drain.  It almost makes me cry.  My eyebrows are almost completely gone and after reading posts on this website I checked the hair on my arms - yep, gone too.  This disease is crazy..... and so NOT understood - only devastating to those of us suffering from it.  Doctor’s don’t understand “self esteem” issues - it’s only hair.. until it isn’t.  

I think mine has burned out. I don’t see anymore loss, however, the natural hairline has receded beyond the ears and diffuse loss through the crown. Unfortunately I had already lost most of my hair by the time I was diagnosed. 

Check out my new profile pic! I got a new bonded hair piece yesterday! My annual gift to myself! 

CurlyK,

your hair looks beautiful as do you!

I don’t want to gooch myself but my hair loss has slowed significantly. I had one blip when I was traveling with a hot spot on my scalp but it didn’t lead to any hairloss *knock wood*. I do t know if it’s burned out because I still have to use Latisse to preserve my eyelashes. Maybe they are the last on the FFA list to attack-I do t know. Arm hair and leg hair is still there (but less than normal) and that’s stayed about the same. 

Castor oil has improved my hair thickness all over and my bangs even appear normal’ish from where they were headed when I was first diagnosed. Hairline has receded about 2.25 cm. I’ve had about 1/4 regrowth forward. Wish it were more but I’ll take what I can! FYI-no drugs but for Clobetasol if I get a burning itchy spot.

Curly K you look amazing!  Thank you for sharing. 

CurlyK, you look awesome! 

& to you &  illustr8r, that is great news that it has burned out!

Does anyone know how long we have FFA before burn out happens

Hello everyone.

i have had FFA for Over 14 years. Last week I made the momentous decision to shave of what hair I had left and get a wig. I don't regret it for one minute. My FFA no longer runs my life instead I am in charge of it. I feel liberated. It's been a bit hot to wear the wig so I have just had my base ball hat on. I have had no stares and no comments in fact no one has taken any notice of me. I hope this helps anyone who is undecided on the next step to take. All take care. 

Even though my FFA hasn’t progressed as far as many in this group, I, too, have taken the plunge into getting a hair replacement system.    It won’t be here until November and will post pictures at that time if anyone is interested.  I knew it was time when I caught a glimpse of myself in the mirror and unexpectedly saw just how much hair had receded - I cried.  I will NOT let this disease depress me when there are other steps that can be taken that aren’t going to effect my health - i.e. the medications with the awful side effects that I read about.  Eyesight loss?  Really?  Not for me.  

Hi everyone

I went to see my original specialist in Paris - she changed my meds to only Bethamesone (spelling) - and said the Minoxidil is just to activate the hair follicles that might still be more or less alive. No more Clobestasol... but again nothing does anything so ... whatever. I put the stuff on to feel like I’m doing something. 

I was travelling in eastern Europe - it was sooooo hot there- and it seemed to me that the heat couldn’t be good for my scalp, but who knows? Thoughts? 

I can feel the sensitive-numb area extends further up the top of my head. The doctor also found a patch at the very crown of my head. 

What are your thoughts about wearing hair in this heat? Is it very uncomfortable? We don’t have much A/C here. I hope I have another year or two before I go this route. 

Curly K you look adorable, and I’d love your input. 

Yeah, it’s hot here in florida this time of year. If I’m outside long periods of time it’s somehwat annoying but honestly we live in the a/c mostly. Hey, having hair is worth the price of being warm. 

CurlyK, is your hair a silicone cap or a lace topper?  I have opted for the lace topper with 12” cascading hair that will blend in with the hair that I still have.  They took a mold of my head so that it would fit perfectly flat to my head and then they attach it with metal crimps, much like extensions use.  It’s a 24/7 piece that needs to be adjusted every 5 or 6 weeks due to hair growth.  I’m curious to know what others are using.  I looked at Follea, but their wigs are truly wigs and not a 24/7 option.  Thanks for any insight you might be able to share.  

Bloomingdalekid, I recently joined this site because I have FFA (not officially diagnosed), but both my temples have lost most of the hair. I live in Los Angeles and wanted to ask you if you know a specialist in Southern CA that treats FFA. And also will be looking into a hair piece and don’t know where to start.

My piece is attached to my scalp using medical grade glue. Like yours, it comes off every 5 weeks, gets cleaned and reattached. I sleep, swim, shower with it. Wash it like washing normal hair. I’m super happy with mine. If anyone is searching for this option try googling “bonded hair piece”. 

Thanks CurlyK!  The plan right now is to use the medical grade glue to attach to my forehead, as that’s where my hair has receded about 2 inches..... and then the crimps to hold the rest of it on.  I hope mine looks a beautiful as yours!!!!!!  Thank you for the information!  

Hi Everyone 

thanks for ongoing support and sharing.

curlyK you are an inspiration.  Your hair looks amazing and it does seem to reflect in your mood and attitude to this condition.  I wonder can I ask does your hair need to be shaved to allow piece to be glued to your scalp?  Do you know if you can have pieces attached to sides?  My sides are almost non existent - add large unattractive ears which protrude slightly it’s not going to be a good look.  

Half baked. My diagnosis and perhaps contributing  factors (as much as we can assume) are very similar to yours so I’m interested to hear your recent dermatologist has suggested reducing medication to minimum level... where do you apply the cream & how often? I’m still taking hydroxychloroquine which I know you decided not to take and given it hasn’t made a difference I will probably stop soon.   I still can’t move towards an acceptance and perhaps never will.  I did buy a wig a few months ago but it is completely hideous.  I too am worried about the heat as we’ve had an unusually hot summer in the UK and I’m heading to Europe next week....travel was my passion...now I wonder if the heat will make it worse?  &Air con seems to irritate my scalp. Will it speed up hair loss?? So many unknowns.  I try to enjoy every single day knowing worse is to come and I still hope beyond hope it just stops before it’s too late.

Thinking of everyone   

@Meme, I think what you have done is indeed liberating, I've pretty much come to the same conclusion that when it gets to the point where I can't hide my hair loss anymore that I would do the same, shave my head and wear wigs when wanted and needed and to know that someone else has done it makes me feel that much more comfortable in my decision.  

I know that I wouldn't be able to wear "helper hair" full time as I get so overheated so easily and as a result I sweat, a lot, like dripping down my face sweat and to have something on the top of my head to add to it would probably drive me mad! Sometimes I think of Samantha from Sex in the City when she was going through the chemo and wearing all sorts of different wild wigs, that is how I want to be! (I probably wouldn't  be that brave, but I will try)  Thank you Meme, for sharing.  

Ladies...as I said in many comments ago, eventually wigs are where it is at for me. I have been managing this hideous state of events for over 6 years now. Started with clip in toppers, graduated to larger ones that taped in front, went to molded that worked and taped around my ears, but as disease progressed found most comfort in wigs. Now I have three that all look pretty similar, same color, same material blend of human and synthetic and I find I am the most confident and comfortable. Admittedly summer and heat is not optimal and often requires a true grit of my teeth while I am perspiring but it is not insurmountable. Here is the thing:  you need to find a wonderful hairdresser who specializes in hair pieces. Work together to find what is right for you. Yes, expensive but pretty much only once a year for replacement if necessary. And now you are not spending other money on usual Hair management, such as color, cut, etc.   Get off the meds, they won’t help, know this is where you are headed, and feel better. I exercise again, take long healthful walks, hang out by the pool, sleep in an older one when my grandchildren or guests are here and am just dealing as best I can. And the best thing is when I run into people they cannot believe how wonderful I look and have aged!  Silver lining!

Sad in Chicago, yes haha- wearing a wig/helper hair means the silver lining is that your hair always looks awesome!  

I wish I could wear one all the time, as I would love to have a full head of beautiful hair, sigh. But I know I can't, I don't even like wearing a hat or anything on my head, it just drives me bonkers, which still makes me wonder why I went through the expense and time of trying the intralace last winter :-/  all the time knowing that it would send me up the wall having it on my head 24/7, anyway- saying that, I do think it is great and good for women that want and can do it  and I also agree wholeheartedly with you about getting off the meds, eat healthy, exercise, and yes, find a Great hairdresser, that is the best we can do for ourselves for dealing with Stupid FFA.  

Got an email from Erika B asking about Low Level Light Therapy.  At the CARF conference they say research shows it does reduce inflammation and nerve sensitivity.  But I don't think there is research beyond that.

I have to find a new hairdresser and I don’t know where to start. Right now I can still hide my loss, but it’s obvious when I’m getting it cut & colored. I’m dreading finding someone new and having to rehash the whole thing to a new person. If you have any tips please share.,

I don't know where you are located, but if you can maybe check out salons online and look at photos/reviews/facebook/instagram posts, that may hopefully help you narrow your choices down to a place you will feel comfortable with. 

Also if there are any shops that do wigs or toppers in your area, they often have a hair salon too or should be able to at the very least  point you to a salon that deals with "not-regular" hair.  

Good luck, it is hard enough finding a salon without having to add Stupid FFA to the mix!

Grrr!  Forgot to add, yes- my hair is pretty much the same as yours.  I can more or less hide it day to day, but when I get it cut/colored/washed the hair loss is there for all to see.  

I finally started bringing my powders with me and fix my hairline/scalp before I leave the chair.  Luckily my hairdresser has been awesome and we talk about it all the time when I am there.  She also reassures me and says don't worry about it, you would be surprised by the amount of other clients that come in with hair loss worse then mine and I am in a small town! So in some weird way that makes me feel better :-/   So while my hair is wet and getting done, I try and just ignore everyone else in there that might be looking at my wet sparse hair and carry on as they say!!

Anyway, again- good luck @MnM, I hope you will find someone that you are happy with to do your hair!

Hi
I don't post on here much so I may well be giving information which you might have been discussing already.
Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who is my dermatologist. She is a lovely lady and is doing a talk on scarring hair loss . I have been receiving updates on people who are talking at the event and it looks to be worthwhile going if you can get there. I got my ticket via Facebook and filled in a survey to get a discounted price.
Also, regarding FFA, I have been sent an interesting article on FFA stating how it's becoming an epidemic. Whilst chatting about the article to my hairdresser she had heard that there the disease could start as the result of a chemical reaction. An example is when you bleach your hair blond and then go swimming the chemicals in the water can turn your hair green......In the same way if you use a chemical on your hair and a different chemical on your face where they both meet a reaction takes place which changes the structure of the hair.
I used to dye my hair frequently and used face cream so it would make sense that where the 2 met a chemical change took place. In the 80s and 90s mum and me used the same hair dyes, home perms and moisturiser. We both have FFA.
Liz
x

Liz, thanks for sharing.  I wish I was going to be in London to attend - i think it would be very enlightening.  Interesting theory Dr. Wong shared with you.  I, too, believe it is a reaction to something we have done to our bodies - be it a chemical reaction to hair dye, moisturizer or Botox.  I continue to find it interesting that this is a “new” disease over the past 15 years - gee, about the time that women really started using Botox and fillers as cosmetic relief.  Or, new hair products that contain oils and sulphate, or perfume.  Some of us just react differently to these products - a small percentage - yet I feel that FFA is dismissed as “just an autoimmune disease” that caused it.  We women will not stop dying our hair, using moisturizer or using Botox and manufacturers of the above products would never admit that their products COULD have this side effect - it would cost them millions of dollars.  AND, the fact remains, we are a SMALL percentage of people with this disease with no cure so even most doctors dismiss it as “oh well, there’s nothing we can do about it.”  Please update this group after the seminar... I think we would all love to hear about it.  Thanks.   For sharing Liz.  

Hi Liz and everyone

I am not too far from London but I don't think I could be free for the conference, unfortunately. On the other hand, I would love to read the article.

I have highlights in my hair and have had them since forever, and am 52 years old so yes, face creams, hair dyes - all of it. But my FFA started before I started with botox and fillers- so I personally don't make that connection for me. 

There was so much heat here in Europe this summer, and I was so sweaty, now with the cooler weather, it seems like I'm losing a dime-sized patch RIGHT on my forehead, where it's nice and visible.  I don't know that there's any connection, but I suppose I'm just a tad paranoid - understandably I guess. I'm a bit torn these days because part of me wonders if I'm doing everything I can to keep my hair- I forget to put my goop on my scalp, or I forget to take the Tetracycline... then I feel guilty b/c I think that (ha!) this could make a difference... 

Meanwhile, I wonder what I will do in a few months. Does anyone here get just a patch of hair bonded to their heads? God, that sounds like a weird question ; ). But that would be a decent solution, really... 

Please, Liz, could you link to the conference and the article?

Merci bien,