Hi I've just joined and its great to read all your comments. I am currently losing hair at the front and my temples, but I am undiagnosed. My docs and derm dont seem to interested. My scalp is very ichy at times and I have the odd very small red mark which could be a folicle scar? Its where the hair seems to be vanishing from. I've been using bettamouse and nizoral which is helping a little with the itch/burn sensation. I am hoping to get a second opinion and biopsy done so I know what I've got. I dont know whether to start on minoxidil or not, but trying to hold out for a definate answer.

Hello Ladies--I’m new from CA. I‘m 45, mixed ethnicity, & perimenopausal. I’ve had skin related problems since the onslaught of hormonal changes began in my late 30s. My symptoms began as intense PMS that turned into extreme inflammation of my facial skin which would swell angrily, very hot & red, & thick. It was extremely dry & extremely itchy & it burned at times to have anything on my face except water. Initially—in my late 30s—I was diagnosed with rosacea, then dermatitis & I was prescribed Elidel cream-- which was very effective at ending the problem then. I thought of these episodes as my body’s custom version of hot flashes.

Fast forward a couple of years & I noticed my hair changing—thinning & a different curl pattern. I noticed that some of my eyebrow hair started sticking straight up. I chocked all of this up to hormonal changes. Then my eyebrows started thinning until there was a large missing patch on one side. I also noticed generally thinning hair, but again thought it was just aging. I thought I may be hypothyroid based on this. By last summer, it was clear that my eyebrows are balding & the hair isn’t growing back. Since last Fall, I’ve realized my eyelashes are thinning & all the fine hair on my front hairline is gone; my hairline has receded up to 1.5 inches from ear to ear & the bald skin left behind is weird. Recently, the facial skin inflammation/burning/itchiness is back with a vengeance but it is limited to my forehead & hairline this time—not my entire face. My neck skin is also affected, but in the way that it is papery thin & overstretched looking, not thick, scaly & leatherized as on my forehead/hairline.

After getting nowhere with my docs, I scoured the internet & began to suspect FFA. I begged for dermatologist referrals, who confirmed this diagnosis last week. Biopsy forthcoming to help guide treatment. My dermatologist says he will refer me to regional hair specialist for consultation after the biopsy, which is at least something here to look forward to, I guess. I am devastated that this is irreversible & that I am helpless. After stressing about this problem last week, I literally woke up this weekend to find that the skin on my forehead had gone ablaze with inflammation & had formed thick, scaly, dry, reptilean layers overnight. It itches as if ants are crawling on my skin & it burns, so that even if I am not looking at the wastel& where my hair was, I can feel it there all the time.

I believe there is both a stress & hormone trigger that has brought this entire condition on for me, possibly thyroid related as well, though my blood tests results have all come in within the large “normal” range that doesn’t necessarily account for what my normal is. However, my free thyroid was at the bottom of the normal range.

I am not one who has been overly invested in my looks, though I am/was naturally attractive. I’ve never worn much makeup or invested in the art of manufactured female beauty as I prefer a more earthy presence. I find myself feeling ashamed, depressed & very stressed over this thing I can’t control. And, I feel stressed that I am feeling such stress when it is certainly the thing I least need. Yet, it is impossible to not panic when being jarred by reality when looking into the mirror & seeing no eyebrows & the marching forth of baldness. (continued)

Continued....

Since getting the formal diagnosis last week, I’ve used my old Elidel prescription for my skin & been trying that on my hairline, forehead & eyebrows. It’s too soon to know if it helps, but it certainly isn’t having the same skin calming effects it did for me years ago.

I been on a low carb, gluten free diet for 3-4 weeks & have lost about 8 lbs. I began taking natural dessicated thyroid to boost my thyroid hormone levels. This weekend, I also started a suite of herbs that are supposed to provide benefits against skin inflammations. Lastly, I bought some bimatoprost (Careprost) & I am trying that for my eyebrows & eyelashes.

I appreciate the sorority of advice & experience here on this forum. I don’t think anyone can understand the psychology of this condition without experiencing it. In fact, when I think about it, my intellect says, “good grief, woman, this is not the end of the world!” but then I see the bald patches & the skin that looks awful & aged & the whole picture looks to me like someone who is ill—& it just brings up an insane amount of panic & stress. Doing all I can to balance myself here at the brink of panic, sadness, & loss.

Alice—you seem to have the itchiness/pain that I am experiencing & you mentioned tea tree oil use on your scalp—do you dilute it to apply it?

Others—what about those Kingsley hair drops? Has anyone found them useful?

Appreciation,
Aimee

Ellen, I've been using Nature's Gate Tea Tree Oil Shampoo & Conditioner and find it to be very soothing. I also use straight tea tree oil on my scalp to help w/ the itching. I agree that gentler is better.

Hi ladies,
Just catching up on all the information as I haven't been on the site since Friday. Simone I don't believe I have had any side effects from the Plaquenil and I have been on it for almost 2 years now. I am getting my eyes checked every year (no sign of any retina damage at this stage) and will continue to monitor that as I don't want to create a more serious problem! At 59yrs old I try to keep fit and healthy with moderate exercise and a good diet and in the past 2 yrs I have kept my weight the lowest I have been since my 20's. I am wondering whether the Plaquenil has something to do with that as when I first went on it I read some feedback that suggested people tended to lose weight. I also mentioned previously that I no longer get heyfever having had it all my life - also wondering if Plaquenil would be affecting that (which is a good thing). I believe my FFA is slow moving (possibly due to Plaquenil) and I have never had signs of itching, redness etc that a lot of you are talking about, which is some consolation. My specialist checks carefully for those signs when I see her which is at the moment every 6 months. While the photos of my hairline she has taken certainly show a difference to 2 yrs ago it has only moved about 2cm in total with a bit of thinning at the sides. My eyebrows may have thinned a bit, but I still get them plucked so I don't really notice that.
Sandy in regard to hair style I am still colouring my hair (look way older than 59yrs if I let it go grey - and the hair loss is bad enough!) however I only use a semi-permanent which is probably a bit gentler than a permanent colour. I have very curly hair however I prefer to have a straight fringe (I think you ladies call that bangs?) with curls behind - short hair and I'm gradually taking it shorter. The fringe covers the receding to a degree, but I'm not sure how much longer I will get away with that! Curly all over is a bit old-fashioned looking so I'm keeping with the straight fringe for the time being. Of course always having had curly hair - I have always wanted straight hair! Maybe a wig won't be so bad after all - I won't have to use a straightener!
Hi Aimee, I think we all understand what you are going through and I hope you find everyone's support helpful, I certainly have.
Love reading all this, thanks everyone. Robyn

Hi Pam-- Thanks for the reply. I am in Sacramento. I will definitely lobby for Plaquenil, though my derm wants to wait for the biopsy results. That said, I'm not really willing to wait 3-4 weeks without getting treatment. Thanks again to all for the sharing of experiences.

Aimee - In addition to using the tea tree oil shampoo & conditioner, I apply pharmaceutical grade tea tree oil directly to my scalp, w/out diluting it. There may be a more effective method, but I put my finger over the opening and tip the bottle over. Then, I start at the hairline and kind of "scratch" the oil back w/ my fingertips. It's a very thin oil (and my hair is pretty fine), so seems to spread easily. It smells strong at first but dissipates quickly. Unlike the clobetasol I was using, I don't have to worry about the tree oil dripping. I wouldn't want to get it in my eyes, though.

Hi Rebecca I'm on hydroxychloroquine which I believe is the same as plaquernil. I'm sure it has helped slow the hair loss down but it hasn't stopped it! Sorry but I don't think there is a magical cure at the moment. I think it gradually burns out but I don't think anyone of us can honestly say they have heard that it just stops. I think most of us on this web site are relatively new to FFA (one to two years) it would be nice to speak to somone who has had it for ten years to see what they had to say!

Hi Rebecca,
I'm not really sure whether the Plaquenil helps with the redness & itching as I have never experienced that and I was diagnosed about 3 months after noticing the first small bald patch near my hairline- the biopsy I had indicated FFA with some scalp irritation which cleared up using Serbizole hair shampoo. The irritation was very mild though and only a bit like dandruff. My specialist prescribed a couple of steriod based lotions for redness etc, but that never eventuated so I didn't use them for very long. My experience is that my FFA appears to be moving slowly compared to some of the comments I have read here and it's possible that is because of the Plaquenil but I couldn't say that for certain - it does sound like a couple of others on the Plaquenil are having some success also though, so I think it's worth a try if it agrees with you. It would be wise to check with your specialist about that.
Celia, I have also decided not to tell people about my condition apart from close family & a couple of friends. It's a strange type of condition to talk about and quite personal. I think because it involves in our 'vanity' we feel slightly embarrassed about feeling so distressed. No one I've told thinks any differently about me and they were all very supportive.

Heidi, I did have email contact on another Alopecia support website back last year with a lady that was daignosed with FFA back in 1996. She listed everything she tried, all the same drugs that we are using but she told me she has lost about 1/3 of her hair. The dermalogists are saying you can lose between 2 to 5 inches from your front hairline, so I guess it is just a matter of luck (or genes) how much you lose and we are all individuals so we will react differently to the drugs that we use. The only drug this lady had not used was Actos - she had used everything else that our group are trying. I should say on a positive note that apart from the FFA she is a fit and healthy woman, she has not developed any other autoimmune conditons so the FFA does seem to be quite self contained and not trigger anything else.

Hi Debs,
Did the lady say if her FFA has stopped and if it has after how many years? I think I mentioned before that my specialist tells me FFA appears to have a life of between 5 & 10 yrs, and I agree that all our cases are individual and will probably have different outcome but an estimate would be good to know.

Hi - I am new to this site and was diagnosed with FFA last summer.
I believe this started about 4 years ago. I am on placquenil and doxycylcline. The Doctor is hopeful about stopping the progression. I estimate that I have lost 1" of hairline and my eyebrows. Although, some eyebrow hair has grown back. For the past 6 months, I have had cortisone shots. I have been through a lot medically - but this is a tough one.

hey Simone.

I decided to go with a wig, since I have lost so much off of my hairline. It was a good solution for me. If your hair is strong enough, and it won't irritate your scalp, a topper might be a good solution. As you can see, I'm Black, and i didn't see any toppers that would work for me.

Whatever you decide, wear it like you own it! It's all in the attitude, I think. Good luck to you.

Lorn - where are you going for your treatment? Some of us in the UK are trying to access those drugs now but we are having to travel a long distance to see a dermatologist in Salford which is a plane ride away for me (or a 3 hour drive each way).
The lady that had FFA since 1996 did not say that it had stopped. If it has only been first recognised as a medical condition in 1994 I don't think derms actually know what happens long term because the longest anyone can have been diagnosed is 19 years... and since not many women would have been diagnosed in the beginning I don't think they would have evidence on how this progresses. I think that maybe it just slows down so it appears to have stopped but I don't know why it would just stop of it's own accord medical conditions don't often do that.

So from what I'm reading here, it looks like I'm eventually just going to have to embrace this whole wig thing. If there is no real evidence of any of these drugs helping before the point of it "burning out" after the need for a wig has already arrived, why are we all taking these drugs? I'm on Plaquenil, but am starting to wonder why. Rebecca, from what I can tell, no one really knows much about FFA. Unlike lichen planopilaris, FFA is no more than a description of what's happening. That's all. It's frontal. It's fibrosing. And it's alopecia. And now everyone is throwing stuff at it which may or may not help. Not having the most hopeful week, but we do get to vent here, right? I hope I get to the point of just being able to accept this fate with some amount of grace. It's just going to have to be the new normal, I suppose.

When I was diagnosed in March of last year, almost a year ago, My derm said there were some drugs I could try but he didn't recommend them because of the side effects. He didn't tell me about any other treatments either and I haven't done anything except using clobetasol liquid when my scalp is itchy and using T-gel shampoo and a good conditioner. He had been giving me steroid injections along my hairline Before most of my hair there fell out - so that didn't appear to do any good. So I've just been getting along without any other treatment. I keep wondering if I should get a 2nd opinion from a different derm. I know I have FFA, and I don't know if it's worth the expense. My insurance did not cover alopecia as a diagnosis so I had to pay for it myself. I think my hair would have fallen out no matter what, and most of it was gone by the time he did the biopsy to confirm it. The rest of my hair is still growing like normal and I get regular haircuts and color it at the roots, since I don't want to half bald and grey! I'm hoping it will just stop at some point and it has looked about the same for a while. I've pretty much come to accept it.

I have not gotten any wigs or hairpieces. The idea of wearing one sounds so uncomfortable that I will probably try to wait until I absolutely need one. My hair has thinned somewhat all over with one thin patch in the back, and mostly bare along the hairline, but I style it with long bangs - fringe, in the front and try to cover it that way. and lots of hair spray! I just hate when I'm outside and the wind blows it all over and so I keep a couple hats in my car and at home if I need one. I used to do a group exercise class at my local YMCA, but haven't gone in a while since I don't want my hair flying all around for everyone to see. I'd rather just walk on a treadmill or outside with a hat on or exercise at home. I really hate that I have this thing I feel I have to hide. And I don't want to be mistaken for a cancer patient. :( I've really only told close family members and they seem to think it's no big deal, but they don't really know how it feels. They are all saying "it's just hair!" but if it was them, they would see it differently! and as for acquaintences I have no idea what they think, just that I'm having a really bad hair day! At least all of you here understand and I am thankful to have found this group.

It's true, Rebecca, it is only hair, but that's huge. My friend told me yesterday that of several cancer patients she has known, one of the biggest deals for them was the loss of hair. She gets me. Unlike many of you, I've told just about everyone I know (and am fairly close to) about what's going on. It's just always been my way of coping. I figure it I put it out there, then a) everyone knows why I'm crazy sometimes and b) maybe I'll learn something along the way. Thinking about how lucky I am not to be losing my breasts, when so many more women have that experience, does put it in perspective, but it's okay for us to have bad days feeling sad, angry, despondent about what is happening. It's happening to us. I've had a serious cancer scare in my life - melanoma at the age of 40 - and I'm lucky to be alive, but this is STILL freaking me out. I so appreciate everyone here sharing her story. We don't know why this is happening to us, but I do know it's not our fault. I strongly suspect it's a combination of hormonal imbalance and autoimmunity. Rebecca, when I was first diagnosed, my husband started mentioning what it was like when he lost his hair. I calmly told him to never speak of this again in the context of my hair loss. The second time he brought it up, I got pretty pissed off. The third time, all hell broke loose (in a car!) and I think he finally got the message:)! He's actually an amazingly supportive man and will love me no matter what - I count my blessings every day - and it sounds like you have a supportive husband. We're lucky. I hope you all have someone who can support you through this - a husband, a partner, a family member or a friend. Have a good weekend, everyone.

Hi Suzanne I think you are right non of us knows, doctors included!I must admit now I know its not all going to fall out over night I have come to a point of acceptance. I'm unhappy its happening, but at the moment its not ever so noticable, unless its windy, and then I wear a hat. I fiddle with it alot when I'm at the gym because when I sweat alot my fringe is so thin it sticks to my face, which isn't attractive! So at the moment I'm ok and if it gets alot worse then I will have to deal with it when it happens but I'm not going to worry because it might not get alot worse! ( I say with my fingers crossed!!)
It is so good having this web site!x

Sorry I've just realised I have commented to yesterdays news not todays! Anybody else suffering from a lack of brain!!!X

Like you Susanne, most of my friends know about my FFA. My husband is very supportive. Even though he was going bald at age 30, when I married him, it never seemed to bother him at all.

Ellen, what is the medication used for FM that they are trying for FFA? I've had FM for years but don't take any meds, just getting by w/ lots of rest, yoga and a Jacuzzi tub.

Here's my thought for the day:
I don't have bad hair days.
Every day I still have hair is a good day.

Sorry- I feel bad not being diagnosed but its so frustrating just being fobbed off and then having to wait for appointments to come through whilst your hair and scalp is constantly changing. I feel like Im having a bad week. My scalp was so sore on Tuesday I couldnt put a hood up. Its better now but still has a very sore spot, my husband says it looks like a raised lump redder than the rest of my scalp. I can't really see it.

My question to those diagnosed with LLP or FFA what are your symptoms? Do you get visible sores? My latest one is 1cm into my hairline, My loss initally started after a sore about 18 months ago in the temple area and although my hair has thinned since I've not been overly aware of anymore spots.

I currently am prescribed bettamousse and betnovate scalp but planning a docs appointment to ask for more help maybe clobetasol instead.

Jules - That's interesting about the melanoma. They got mine just in time so I didn't have to have anything beyond a wide excision and sentinal node biopsy, which was negative, thank goodness. It's another thing that takes you for a wild ride in your head, isn't it? I'm going to tell my onc about this the next time I see him. He does research with Melanoma, as does my dermatologist. I'm guessing our immune system is somehow to blame for it all. I teach at university and am also concerned about being in front of people. The whole scarf look doesn't really suite my style. Maybe I'll become more of a hippie, then I can wear the scarf. Nah. Probably just a wig. Alice, I'm so glad your husband is supportive.
Stacy, I have had visible little sores but none since I got off gluten. Still the past few days I've had itching and some sore spots. It seems to gear up a bit right before my period. Yes - I am still getting that, but I can't imagine that's going to go on much longer. So I think hormones are at play as well. I think FFA is just used as a catch-all to describe the fact that the hairline is receding. They do biopsies, but there is no result which says "this is FFA". It's purely a description of what's happening.

Thanks Susanne, I've noticed increased activity during my period, yes I'm only 34 but was wondering in this coincide with early menopause. I havent lost much yet just alot of thinning on both sides and around the hairline. Have you given up Gluten altogether? I have started to drastically reduce my intake of gluten but think it would be hard to totally block it out. I also had a breast cancer scare last year which needed a biopsy- again I believe this is probably again down to hormone imbalance.

Hi Ladies,

Following the recent comments today-- my issues started in my late thrities and DEFINITELY are triggered by hormonal influences. My most recent inflammation event last week was associated with onset of my period and a good dose of simultaneous external job stress.

I am not being treated yet for my FFA and am considering whether I want to do so, even though I am desperately unhappy with the idea of further balding or wearing a wig-- which are clearly the two possible inevitabilities for me.

Looking for the lesser of evils--I am wondering-- has anyone tried using synthetic birth control hormones (pill, shots, etc) to both level their hormones and actually suppress their periods as a way of slowing the hair loss? If there was a shot in the dark for that to work, I think I would be more open to that than the other treatments.
I got taken synthetic hormones almost two decades ago. Is anyone actually on any syntehtic hormones and still experiencing this problem?

Thanks,

Aimee

Clarification (I need spell check!)-- I've not taken synthetic hormones for nearly two decades...

Stacy - I have totally given up gluten. Honestly, I just don't think it's that hard, although my husband does make the best bread and pizza in town. I like to cook, so that makes it a bit easier for me. I've had enough benefits from doing so over the past month that even if it doesn't stop this FFA thing, I'm going to continue with it. It feels like I've been put on an anti-depressant. I'm still upset by it, but haven't been very depressed or sobby about it. It seemed to really be helping - my derm noticed the difference - but then the past few days I've had a bit of a flare-up.

Pam, I also had a scalp biopsy that was + for LLP, but dx'd w/ FFA due to the pattern of hair loss.
I'm wondering what other hair loss others have noticed. A few years before I started losing hair on my brows & hairline, I had trouble w/ eyelashes falling out. An eye doc suggested using hot compresses over my eyes to unclog the follicles. I still have trouble w/ lashes falling out easily, but they grow back. My eyes are also very dry.
I've also lost all of the hair under my arms and most of the hair on my legs, which I am not sorry about. The hair on my forearms is much thinner. In fact the only place I don't seem to have lost any hair is where it doesn't show unless I am stark naked, if you know what I mean.
What other hair loss have you noticed besides brows & hairline?
Alice

I've lost hair on my legs, arms, eyebrows and hair line. I have noticed my eyes are dryer and don't water as much as they used too. My head doesn't itch its tender if i tap it by mistake with a hair brush.
I started my menopause when I was 43 and I'm not on HRT and that was the first thing I asked my derm but he said it wouldn't have made a difference, if I was on it or not!

My hairloss started whilst I was on an implant for birth control, i had that removed and was put on the pill- just a normal one probably not one of those recommended for hair loss. over the last two months whilst on the pill I have had whats felt like flare ups, more sensitive scalp, hair prone to breakage etc. I then came off the pill but this was only a few weeks ago and my flare ups are still there. Its very frustrating I have an appointment in 6 weeks so hopefully I will get a diagonsis then.

For those visiting Salford, If the travelodge you mention is near Old Trafford, there is also a Premier Inn there which has free parking. I was there a few weeks ago for something else and the Premier Inn rooms were really nice. Its on the other side of the water to the Hospital but looking at Google Maps it should be quite accessible. I dont have my appointment til April and only live 2 hrs away so wont need to stay over but this might help someone. PS it was easy to get to the trafford centre too for shopping!