Sorry, the "Add Comment" button is below right of the window you'll be writing in. 

Thanks Anne, I hadn't thought about it being an allergic reaction. I just assumed it was related to the FFA. I will definitely call my dermatologist. 

Thanks also for explaining how to post a comment to this group. I figured that out after I accidentally emailed the members. : )

I look forward to learning and sharing with this group. The support here is amazing. 

Good afternoon.  I just joined this group today... and, well, have been having an up and down week to say the least.  About 5 years ago, my hair dresser found a small bald spot above my ear.  I never noticed, because I wear my hair in a shorter inverted bob.  I went to the derm, and he said alopecia areata.  Scared, but figured I would be okay.  No treatment except some cortizone shots in my eyebrows (which had also started to fall out).  Fast forward 5 years.  I have 2 spots above my ears (about an inch back), and aside from that - not very much. I went to my derm this week, and she put in my chart that she noticed follicular erythema around my hairline.  She didn't say it outloud, but I looked up my info. online, and saw she wrote that.  So, of course I looked it up.  It says it is a "pre-curser" to FFA, and also a time when it is "active", and hair will begin to fall out.  I am so scared.  I guess I had thought that after 5 years, this thing had begun to stabilize, and I was blessed enough to still be able to easily hide it.  Something tells me that is not the case.  Any words of advice, wisdom, experience would be so appreciated.  It's also noteworthy to say that I have no hair on my legs - haven't for 5 years.  Hoping to hear back... Lori from Pittsburgh, PA

Lori, unfortunately you are following in the footsteps of most of us....slight eyebrows left if any, all face fuzz, leg and arm gone, and a band across hairline of loss.  My best advice is to start getting fitted for a clip in hair piece now so that it is not apparent when you really need it; it will cover your hairline, crown and depending on fit the the sides over your ears as well.  I have two.  One very expensive real hair that I take very good care of and another one for summer, working out, etc. that is synthetic and looks very good too but is much less expensive.  Start learning how to define and draw in your brows now with pencil first, then powder, and finally, I use a diffuser which makes the powder stay on and look better.  

This is the worst thing ever, but if you figure out how to look your best when you have to and start experimenting before you really need to, you will do better than I did.  It is difficult for sure.  

Hope this advice helps; please comment back for more info if you feel you need it.

Hey, Sad in Chicago (I wish that you weren't sad... don't even know you but my heart goes out to you).  Would you mind sending me photos of the hair piece?  And would you also mind telling me how far your hair has gone back - and in what amount of time?  That information would be helpful.  Could you get away without your hair clip in?   Many thanks... more than you know. 

OK, not as sad as I used to be now that I am managing this all a little bit better.  Maybe a better name would be ANNOYED!  So, how do I send an email through this blog?   Not that much of a techie.  Let me know and happy to help.  

In the meantime, I would say my hair loss is back over an inch, if not more. My forehead on top is a shiny mess.  I do not at this point go out without one of my pieces unless I am wearing a cap -- I prefer baseball caps to hats.  In winter I might wear a wool type cap with what is left of the sides sticking out, but I was always a bangs person so I think I look funny without anything on my forehead. I guess I have been dealing seriously with this for two years before I got the clip in.  I was always pushing my hair forward but it got to icky and fuzzy and did not look appropriate, plus I was always worried about the wind (being in chicago).

I have a good hairdresser and the pieces I got work pretty well.  Sometimes I feel like you can tell, but I have been assured not.  I think you never get used to this.

Hi Sad in Chicago,

Would you mind sending me a picture of your clip hairpiece also please? I think my  may be about the same as you have described except the areas above my ears are worse. Also the back of head has lost a bit at the hairline.

Thank you in advance.

Yes... annoyed is better!  You are so sweet for sending back so quickly.  My email address is lobertella@yahoo.com if you want to send a picture... I'd be happy to send one back.  My hairstyle, as it is today, it goes completely unnoticed.  But... I have to face the fact that it won't forever.  I guess I was hoping that with the start of this being in 2010, that it had reached its "burnout" stage... because it hasn't gotten that much worse, and the only patches I am missing are above my ears... (nothing along hairline yet).  Does it actually turn into an actual "band" of hairloss?  I wonder if anybody ever had it reach the "burn out" stage w/out actually ever losing a whole bunch... Ugh.  Thank you for your quick responses... you are helping me more than you know today.  God Bless. 

I did post a photo of my husband, son, and I on my "page"... not sure if you can access it... but... that is all of my "own" hair. 

I will take photos and email you tonight.  At work now.  I think mine started slowly, at first I was diagnosed with female pattern baldness and told to do Rogaine and Propecia.  None worked and I noted a slow progression of great loss in front.  Finally my dermatologist diagnosed the FFA (especially easier to do when no facial hair left) and pretty much said nothing would help.  So I stopped all medication and went the clip in route instead.  The back of my head is fine and the top is pretty thin, but the clip ins still work OK.  You will see that I have a layered look so everything blends pretty well.  more later.

hi Jen,

Since English is not my motherlanguage, I don't understand what this means: " I took the hair on a thread"?

Sas Holland, English is my mother tongue and I didn't understand it, either.

LOL, Alice!

If you join "her alopecia.com" and look for a poster named "hairscared", there is a demonstration under tricks for topper clips. She is a brave beautiful woman who wears hair beautifully and posts pictures. She wrote the tip that I posted.  Hair  on a thread looked somewhat like an apron.  The apron waist band would represent the thread and the front of the apron would be the area where the long hair is attached.  You would place the hair at the nape of your neck at the back under your own hair, bring the thread to the top front of your head and tie it there. Then you can attach bangs to the thread instead of your own hair.  I hope that I have not made you more confused. I suppose that you could just tie a strong string around your hairline area and attach your bangs to the string. It may be worth a try for those who do not want to clip onto existing hair.

Jen.

ok thanx Jen,  I will have a look at the site you mentioned!

Just wondering - of those using Regaine and seeing an effect - how many are using it on their whole head, or just around the area of hair loss. Funnily enough, my Derm said to only put it around my hair loss "as you don't want overgrowth"!! ha - as if any of us could ever worry about having TOO much hair. Had to laugh.

Has anyone experienced more hair loss before hair gain when using Rogaine?

I use generic Rogaine all over my head, or at least as much as I can cover with one dropperful of the liquid. It has made my hair much thicker and easier to style to cover up the hairloss. It actually worked do well that my hairdresser started using it, too. I started with 2% twicecp a day, then switched to 5% once a day. 

I've had success in my eyebrows with Rogaine 5% each morning, and Elidel cream each night.  I apply both with a Q-tip, no fuss, no cleanup.  To answer Jen's question, I have been told by many sources that you DO lose hair a few weeks after starting the Rogaine, but then it fills in nicely.  Of course this is ONLY in the areas that have not been affected by FFA.  Sadly, there is no hope of regeneration when the follicles scar over.

My hairdresser and I have actually noticed some new growth at the sides and just in front of my no receded hairline.  My theory is that only the follicles actively growing hair scarred over and the Rogaine awakened those that were dormant, like on the rest of my head. I didn't notice any shedding when I began using Rogaine. 

I think I'm going to bite the bullet and try Regaine.  My FFA is thankfully moving very slowly and my scalp is fairly clear.  My derm seemed to think that it was worth a try.  From you lovely ladies, I gather the men's strength foam is best but is it the regular strength or Regaine extra I need to buy?  The cheapest I've found is through Amazon.

Thanks - this site is keeping me going!

Love Jean

Jean, as I understand it the women's is 2% and the men's is 5%. My derm advised me to use the 2% twice a day initially, to make sure my scalp could tolerate it. After 3 mos, and about the time I started to notice new hair growth, I switched to the 5% once a day. Using foam or liquid is a matter of preference. I like the liquid, because I can get it right on the scalp instead of the hair, but most others like the foam. Good luck!

Jen, I noticed extra shedding a couple weeks after I started using Rogaine.  It's perfectly normal, commonly referred to as dread shed.  It's a good sign that the follicles are being stimulated & preparing for new growth.  My dread shed lasted for about a month, then I went back to my normal ffa hair loss.  I also grew hair in areas where the ffa is active, but those hairs are fine & wispy.  I've been using 5% Rogaine foam over my entire head and on my eyebrows once a day for almost two years, and haven't experienced any kind hair overgrowth.  

I visited my dermatologist at the University of Minnesota this month and am participating in a research study to evaluate FFA-clinical portion; the sponsor is Duke University. They are looking for participants so if you're interested you can ask your dermatologist for information.

I've also been in to my hair stylist and wanted to share his suggestion to cut my hair into a long pixie. I've had long hair most of my life but with about an inch of hairline missing I decided to give a short haircut a try. I'm still getting used to it but I have to say the focus if off my forehead now. Just google long pixie haircut and you'll get the idea. Hair is swept forward to create bangs. 

Also, I just wanted to share this story about stem cells growing hair from the I fucking love science web site…http://www.iflscience.com/health-and-medicine/scientists-grow-hair-....

hello all. My FFA diagnosis was confirmed just this past Friday (Jan 30, 2015).  Along with the confirmation form the biopsy result, I agreed to get steroid injections. My Dermatologist tried to be as quick as possible but the 10 injections were SO painful.  Can't wait 'til next month's dose.  This whole thing kinda sucks. After 2 years of intense stress and then Just as I felt like I was getting back on my feet my beloved 21 yr old talented musician nephew died by suicide. I never knew there could be a sadness and grief level that goes deeper than I've felt in the past, but, there it is...and now I have this auto immune disease.  *sigh*.  I start acupuncture, after over a year without, tomorrow.  It's interesting and helpful to read all your posts. it turns out, Frontal Fibrosing Alopecia is one of the most rare.  I have a question.  I wonder if my eyelashes thinning and becoming much shorter is a result of this too?  I was told a long time ago I have blepheratis. it's not the end of the world to have these problems, but it sure is demoralizing. Only people who are experiencing it can relate, everyone else keeps saying "it's not the end of the world"

So sorry to hear about your nephew. That is incredibly sad to lose someone close to you at such a young age. So sorry for your loss.

Your recent FFA diagnosis, although, not the end of the world like you said, really does suck. I get it completely. There are many other things that are far worse, and I too have told myself this many many times. The injections do hurt, I agree. I told my dr at my last appointment while she was doing the injections, that she was making me curl my toes! She tries to hurry through them, but it's just terribly painful. I find that if she does the left side of my scalp, and then gives me a 5-10 second break to let me catch my breath before moving on to the right side, that it seems to help a little bit. 

I think losing your eyelashes is pretty normal with this condition. There are products that your dermatologist can prescribe for you to apply to your eyelashes and eyebrows, that may help with the loss. I have used products on both my eyelashes and brows, and haven't experienced too much loss in either of these areas. I have no hair on my arms any longer and very little on my legs. It just seems so weird to me.

I still have very intense itching with this condition. My scalp itches almost constantly, and I have pretty severe itching all over really. It can be maddening. Some days are better than others, so I just try to take it one day at a time. 

All the best to you. Hope you find comfort in this site, as I have in knowing that you aren't going through this alone.

Hi Dragon & Fox, Wow. I can really relate to a lot of what you said. I too experienced my greatest stress and grief (the illness and loss of my mother and best friend) a few months before my FFA really kicked in. I am so sorry that you are going through such grief. It is a sad and lonely place. I am glad you posted and are here. I went through months of the steroid injections, and yes, OUCH, they are horribly painful. One time my derm did about 20 and my head was bleeding after she was done. I think they are worth a shot. I did them for 6 months and really did not notice any difference (but I am not discouraging you because I know some people on here say they work!). I found, for me, that the liquid that I put on 2-3 times per week worked just as well, so I stopped the shots. My eyelashes also started thinning horribly and then my brows a year or so later. I do not know if it's related to FFA, but it seemed to be a precursor for me and the onset of my FFA. I started using Latisse (bimatoprost ophthalmic solution) almost immediately and my eyelashes grew back and most of my brows. I still use it every night. I get a prescription from my derm and buy through Canada since it is so expensive here in the U.S. I also understand feeling demoralized. I went through feeling very sorry for myself and a horrible depression about it all. I guess what I can say is that it does eventually get better. Anyway, I wish you all the best. I hope the acupuncture helps...and again, I am so sorry for your loss. 

Dragon&Fox, I'm sorry to read your story but you have found a great support system here to help you get through this.

To Lo: I'm too camera shy to drop a picture of myself here but here is a picture of the general idea. The long pixie that I have is similar in that it combs forward (we joked about how this is like a comb-over for my FFA :) from the side and the bangs swope over my forehead. I'm really liking how easy it is to maintain. And I'm not focused on my forehead so much.MJ, I have the same scaling but little to no itching or redness; but the presence of the scaling is how they know the FFA is still active. After forgoing steroid shots for 18 months I started getting them again in Nov 2014 and have noticed little hairs growing at the hairline. As far as the scarred forehead skin, my dermatologist has recommended trying to build the collagen there to plump it up but RetinA is too harsh for me. I know there are other weaker drugs but I haven't tried them yet. I am planning on it though.

Dragon Fox:  First, I am sorry for your loss.  May your heart heal in time...

My diagnosis, too, came last Friday.  It was a huge blow... I knew in my head and heart that is what it was, but to hear the words - not easy.  I start my injections this Friday.  I just wish that I knew if the injections and Plaquenil really do make a difference in the rate of loss - or even halting it temporarily.  I feel like I read a lot of posts on here, and the treatments were to little avail.  Has anybody had good success with the shots/medicine?  I have been losing hair for 4.5 years now... and wish I'd started this process sooner... maybe it would have made a difference in the progress.  Who knows.  Mine started above my ears (well, my eyebrows went first, and leg hair)... and progressed a bit up towards my temples... now I know it is "active" again... and it is starting on my forehead.  I can still get away with my "own" hair... I wonder how many of us women out there are still able to do this... It would be nice to see that.  

Ellen:  I love that picture that you sent.  Great haircut... I'll bet yours looks fabulous.  

Lynn: Funny (or not) that you mention the itching.  My scalp isn't itchy (although it does burn), however my skin is very itchy.  I am on prednisone because it got so bad.  The derm says it is "winter itch" or eczema... but I get these tiny red bumps that sometimes cluster, other times are just singular - but my goodness to they pack a punch when it comes to itching.  I don't know if it is related... but it seems they are running parallel.  

Dragon Fox, I am so sorry about your nephew and your diagnosis. Losing someone so close and especially to suicide is very difficult.  No one knows what pressures people are under. I am still grieving the loss of my husband three years ago and found out last Friday that my baby sister has early onset of Alzheimer's. She is 50. I discovered my FFA 2 months after my husband died of cancer but I think it may have been there since the previous year but due to caregiving, I never had the time to look closely in the mirror. I remember glancing in the mirror while getting dressed before he passed and thinking that I look different but could not quite put my finger on the problem. The round spots started after he died, then I ran to the doctor. I have to try and make sure that I pace myself so my sister's situation does not cause me to have another big shed.

Thank you all for sharing your stories and experiences. Does anyone else feel tired a lot? Auto Immune diseases are never just one thing. Couldn't make it to acupuncture today since it doesn't stop snowing. Hoping my husband can find our house when he returns home from work later tonight.

Purplemainst,

I saw your message on my emails but I could not find it on this wall. I too am now losing hair not just on the hairline but everywhere on my head. Luckily my hair is very coily and so it is not that easy to notice. I use black eye shadow wherever the spots are noticeable.  I  cannot hide the hairline at all. I know that eventually I will need a wig. I too am trying to move on with my life.

Hi Norfolk, Sometime in 2010, I lost the outer sides of my eyebrows. Then they grew back. In Dec 31, 2010, I was getting dressed to go out and I noticed that my hair was not looking normal but I ignored it since I was rushing. During 2010, my hairline was progressively looking different but I did not pay much attention. I was caregiving for my husband who was dying of cancer so there was not much time to worry about how I looked. Two months after he passed, I noticed the first round spot on my hairline. There was no way to miss this one. This happened in Nov 2011. I thought it would grow back because in the early 90's, I had alopecia spots which grew back in. However after waiting months, it stayed the same and I went to a derm who immediately diagnosed FFA and injected the hairline. Within a few days, I lost the whole hairline 1" to1.5". I was devastated.  I stopped all treatments myself since I did not think it was working and there were dents in my head. I am now thinning all over but I am lucky to have very curly coily hair that hides well.  My have lost about 75% of my eyebrows. I try to draw them back in carefully using pencil then powder and primer. It looks good unless someone's eyes are extremely sharp. I am counting on the fact that people in my age group (50's) do not see well anyway and young people do not spare a glance at me anyhow. lol. I was really upset at first but I do not worry so much about it. As long as I can figure out a remedy (eye pencil, eyeshadow, etc and possibly wigs or hairpieces) I do not spend time thinking. I am scared of the big stuff.

Norfolk,

I see many women with receding hairlines. I am not sure if they know about FFA or if just put it down to aging. I also see lots of women with fabulous hair. I now believe  that these are wigs. During a TV interview from Malaysia at the time of the second plane disappearance, I saw a woman being interviewed whose hairline was extremely far back bit she was confident and comfortable while she talked on the TV.

Hi Jenl,

Thanks for reaching out.  Had a moment where I could of spiraled down pretty low over this MESS, but I came here, let is out and picked myself up again and went out into the world.  My hair situation is BAD, no way to use anything but a wig or other covering.  I have had this issue for a long time, I just had no clue about FFA and things were very gradually and then only faced it when things were pretty progressed.  I just wish it was more socially acceptable for women to be balding.  Fragile today, but not giving in.  Thanks again for your messages. 

Purplemainst,

while we wait for the world to accept hair loss in women, we have to go on. I have found a lady on the internet who wears wigs and hair pieces. She is knockout dead gorgeous and her hair is fabulous. She is a great inspiration and shows how to wear the different pieces.

Hi Jen,

Thank again for being there I as go through. I am going toward peace, slowly but I am hoping for true contentment with the situation.  And there is no way around that, have to go through it to get to it..  I so want to be that person who can put on a different look every day and go forward with joy.  

Jen, my story is so similar to yours.  Several years ago I just couldn't get my hair to look as good as it used to.  I tried different haircuts, shampoos, root lifters, and hair spray, and nothing seemed to help.  I now think that that was the early stages of my ffa.  I'm desperately trying to hang on to as much of my hair as I can, but sometimes wonder if it won't be easier when it gets to the point where I can just pop a wig on in the morning and not spend time trying to make my hair look normal.  The one thing I miss the most about my pre ffa days is being able to tuck my hair behind my ears or make a pony tail on those bad hair days.

Me too Anne. No more ponytails or updo. I liked wearing my hair half up and half down. I always wore it off my forehead. That style suits my round oversize face the best. I do not look good in bangs.  Anyway, like I said before, I am scared of the big stuff not this annoyance. 

Claire, I had 2 derms offer me dutasteride but decided not to take it. For those who do, I believe the current thinking is thatbonce a week is enough, rather than daily. So far as I know, I am the only one who has been using spearmint to lower testosterone levels. My hairloss has been minimal and I have had some wispy rrgrowth on the sides. I also use plaquenil, betamethasone diproprionate, elidel, and rogaine.