Ellen thanks for the link to the article about sugar. It was an article I read a few months ago about how sugar is poison, that started me thinking about how much sugar I really ate, and how much more sugar I am eating than I once did. My doctor did say that menopausal women do eat more sugar due to changes in their body, so I put it down to that. After hearing all the other comments I must say I have to consider that sugar might be part of contributing factors to my FFA - can't wait to get my copy of I Quit Sugar, to start work on getting as much sugar as I can out of my life as I can.
Couldn't help but agree with others about wine though - don't want to give up my glass of wine at night - that might have to be my treat of 'sugar' each day rather than a cake, biscuit or piece of chocolate! Listening to all the stressors in everyone's lives over the years I'm convinced these episodes are related to why we have contracted FFA. Robyn

I think it was Judy who said that when she went to her dermatologist she was surprised because she only saw women with diabetes with this condition. I always thought that this had something to do with the way that I metabolize carbs and sugars. I had been on a very strict diet right before I was diagnosed. I was really restricting my sugar and carb intake and I think when my body started getting them again, things went haywire. I think our hormones (or as my daughter likes to call them - horrormones) are whacky from menopause and this changes the way we metabolize. I know Celia said it happened after she was really sick and I am assuming she wasn't eating much . . .
Has anyone heard of anyone with this disease who has actually gone into remission?

Hi Pam. I've mentioned my mum before. She has FFA and has lost a band of hair, about 2 inches wide, plus her temples and eyebrow hair. She says that she feels she's had it for about 6 years but doesnt think it's progressed for thr past 2 and a half. Mum had never heard of FFA before I was diagnosed last September. She had originally thought that she'd caused it by wearing a visor when she played bowls. She said she had always wondered though why it never tanned. Anyway, she has a fringe so unless the wind blows you'd never know she has it and s I say, she thinks its not got worse for several years, she's never taken any tablets for it. She does however miss her eyebrows and this causes her far more upset than the hairloss.
x

People have mentioned stressful events (health/loss of family member)near the onset of their hairloss. Did anyone have any major health events as a child? Just thinking that maybe our immune system got whacked out early in life and as we age, these auto immune things start popping up. I had pneumonia and scarlet fever as a very young child and I think I had allergies issues early on too. I'm sure stress can play into this disease too. Everyone reacts differently to it. I just can't think of anything that stressful that took place just prior to the hairloss. There has to be more than one issue here. Sleep depravation can do alot to a body too over years. It could be some preservative/chemical we injested years ago that has slowly attacked our bodies. Many of us in my age group (at least in the US) I think lived on boxed, frozen, processed foods growing up. It was popular to have these easy to fix meals when all our mothers went to work. There wasn't the time to fix foods from scratch. Cancer loves sugar, so who knows what else it does to your body. Just a few rambling thoughts - thanks for listening!

Susanne,

I sent you a message but am not sure how it works. Did it arrive in your inbox? I'm interested in who you see at UNC.

Alice

Celia, hi there, I have been back at work after my 5 week break so I have not been online for a few days... I have now been in the wig at work for a week, I was at work this morning and it is unbelievable that I can stand right next to someone chatting away and they are asking me where I had my hair done!!!! PJ, I did not have any problems with my health at all in the run up to getting FFA, I did not have any stressful events either... when I noticed the initial recession on my temples I just thought it was the menopause starting and part of the ageing process. It is so good that there are now 38 of us to share info with. Good on Celia for starting this group up.

My mum reckons that the hormones we absorb might have a part to play. Those such as in the contraceptive pill and in the foods we eat. I'm a big milk drinker and I dont think this can be good and the stuff they feed animals before slaughtet would makybe make us wince if we knew the details. Does anyone have FFA more on one side than the other? The right side of my head is at least twice as affected than the left.Half my right eyebrow has gone too. In addition to this I have problems with other righthand areas of my body. My right eye, my gall bladder etc. Does anyone have gall stones? Also, a weird question I know, how many of us are left handed?
xx

Welcome, Simone and hi, everyone. Celia, I have to say, I've been better at reducing my wine intake, but I haven't stopped it completely. We have to have some pleasure in our lives. There are mixed messages about red wine as inflammation-reducing/inflammation-inducing. I'm trying to only have that glass with food. What a lot of people are saying about sugar fits with what my nutritionist told me about having to be sure I don't have so many sugar highs and lows - she thinks that's part of what got my system out of wack because I often eat breakfast, don't have a good lunch, but then eat again in the evening. I've never had diabetes, but my dad has had some blood sugar issues, bordering on diabetes and he's completely controlling it with diet and exercise. So I'm trying to be moderate in my sugar-intake (only small treats after having eaten something real), limit alcohol and then I'm still off gluten. I'm also eating some beef stock every day which I make myself (lots of minerals and gelatin, which is good for hair and skin.) My hair loss seems to have slowed down and for the past several days I've had no inflammation at all. I'm sorry if I'm repeating myself too much, but I just wanted to post an update. The tricky thing is that I've made quite a few changes, so it's hard to say what's helping, but it does seeem to be helping. Time will tell... All the best to everyone!

How do I know if have any inflammation or not?
x

Liz - redness.

Hallo again :o) Did anyone who has seen Dr Harries at Salford, stay the night in a hotel? If you did, what one and would you recommend it? xx

Thanks Jules. I shall stay at the Travelodge :o). I've tried to take a picture of my forehead to show the bumps but it doesnt come out very well. I have no redness or itching and never had had. The bottom of the picture is where my hairline once was.
xx

I've been lurking for a while and finally decided to post a comment for the group. I am 61 years old, live in the US and have had FFA for about 1 1/2 yrs.

About 6 mos ago, I talked to my dermatologist about a woman in Greece w/ FFA who was successfully treated w/ Avodart (a prostate med) and Elidel (a cream for eczema). See http://www.dermattikon.gr/magazines/_1/KATOULIS%20EN.pdf.

She gave me some samples of Elidel and it has helped my eyebrows. One was noticeably thinner than the other and now they are nearly the same. I still have some itching and soreness, though.

The next time I went in, my doc had done some research and offered me a prescription for Avodart, but I wasn't ready to go that route yet. She does have one patient taking it, so I plan to ask about that when I go back next month.

I have quite a bit of itching and soreness all over the top of my head but find that tea tree oil helps. It seemed worse when I was using Nizoral shampoo and topical Clobetasol. I think they must have been too irritating.

Has anyone else tried Elidel for their eyebrows or tea tree oil for their scalp?

Alice

Hi, Celia. Elidel hasn't helped my hairline, either, but has helped my eyebrows. I still use pencil to fill them in but can pass for normal w/out it.

Liz - I have the same look too. I looks like this and then it falls out. No itching or visible inflammation.
Simone, I have been getting my wig info from a site in the USA, WWW.WIGSUPPORT.COM the ladies on there are fantastic. They post photos of themselves in different wigs, tell you the name, brand, where they got them, how to shampoo, cut, style them... literally any thing you can think of they will have the answer. It also has helped to normalise wearing wigs for me by seeing how beautiful those ladies are.
In the USA you have great wig brands and online suppliers. The wig I wear to work is a Jon Reanu wig called Ignite (the wig in my photo is a Julia wig also by Jon Reanu) have a look at www.wigs.com that is a good website with lots of wigs, I would also then just input the name and brand of a wig you like into the internet search engine and see if any other site has it cheaper.

I am sure the hormones in food is detrimental to our health and it does make sense that it could be related to our FFA since this condition affects women close to menopause or post-menopause. I hope that now Celia has given us so much help and info to get to Dr Harries there will be enough of us to really get some more research on FFA.

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.