I'm not very computer literate,andI'm not sure if I'm writing in the right place to reply to you all,hopefully you get this!!! I realised there was a problem in January as my hair was receding like a man's would.I went to the doctor and he did loads of blood tests, they all came back ok, except my hormone ones, which I already new as I have been going through the menopause since I was 43 and I am now 48! Over the next few months I was having some other issues with allergies and I was waiting to see a consultant so I thought all this, and the thinning of my eye brows would be connected, and the consultant was going to give me a magic pill and I would be right as rain!!! When I went he said he didn't know what was wrong and I should go and see a dermatologist. To cut along story short, I went private, and I have been given hydroxychloroquine 200mg and dermovate scalp application which I use morning and night.I have tried reflexology, a high alkaline diet, silica and hair and nail vitamines. Do I sound desperate!!!!! Iam so confused I don't know what to do for the best.Should I go down the medical route which uses medication that could damage my liver,kidneys, my eye sight,and even could make me loose my hair!but has had results which slows the process down but doesn't cure it or should I go down the complementary medicine way who haven't heard of frontal fibrosing alopicia so they could be working on an area that will make my body work better so will it make my hair fall out quicker!!! I am so confused I don't know which way to turn, any ideas anyone?

Hello all!
I was diagnosed with scarring alopeia 2 years ago. It started out with me realizing (by looking at a wedding picture) that my eyebrows had disappeared. Also, my head was itchy and at night got cold. I went through a battery of tests disproving thyroid, finding gluten sensitivity (which I now avoid) and finally a derm specialist who happened to have done her fellowship in scarring alopecia.
She biopsied my scalp and found moderate to severe inflammation. I was on some anti-malaria med for a while (anti-inflamatory) but it did nothing. I was on ACTOS for a year and and cortizone shots. My eyebrows came back and my inflamation abated. I didn't like being on it due to potential side affects, and stopped last year. Unfortunately the inflamation has returned (mild) and I have started loosing my eyebrows again.
I'm thinking of getting eyebrow tattoos.
That's it in a nutshell. My hair is thinning on the front, but it's not so bad unless the wind blows. (My hair is pretty baby fine anyway). I went blond to soften the color difference between my scalp and hair. Everyone assumes it's to hide grey.
I've been pretty open about my condition with friends and co-workers...warning them that I'll probably become the crazy hat/scarf lady eventually! :)

Hey y'all!
When I was going to my dermatologist who did her fellowship on scarring alopecia, she said that (at least her) research implicated the oil produced by the hair follicles. She said that for some reason, the oil is not normal (something about messed up "lipid pathways"). The inflammation is the result of our bodies rejecting/fighting the "foreign" oil. In this sense, our alopecia isn't technically "auto-immune"...but it's all related. Anyway, ACTOS, the diabetic drug, does something to the lipid pathways and it seemed to help my case. BUT, that drug also is implicated in a lot of bad side effects, so I stopped taking it after a year. She is waiting for the active ingredient in ACTOS to be produced by pharma in a topical form. Problem is, that doesn't seem to be happening anytime soon. In the meantime, it seems all we can do is treat the inflammation and try to break that cycle. Bottom line, the medical establishment doesn't really know much. Scarring Alopecia is supposed to be RARE....yet my doctor said she is seeing A LOT of it in that past few years. hmmmmmm

Hello Pam I'm using anti malarial drugs and steroid lotion twice a day. I would like to say it has relly slowed the hair loss down but if I'm honest I don't think it is. Sorry that isn't what you want to hear. My doctor did say it works better on some people than others so I hope you are one of them! I have also tried a change in diet, vitamins ,silica, reflexology, and I'm using Philip Kingsley itchy/flakey hair products.I am also desperate for imformation on something that i can feel positive about, that might actually work. I would love to find a professor or someone who is doing research into frontal fibrosing alopicia that we could all give our own infomation so they can collect data and perhaps get some results.

I don't wear anything yet, accept for hats on windy days! I've been on medication since the end of May. what is Actos?

Sorry i went to bed it was after midnight, I had spent nearly two hours trying to put a photo to my name, I told you all I'm computer iliterate!! I realised after I sent the message that Actos is the medication that Carol Sue was on, I think she felt it helped but came off it due to the side effects!

Hello, I haven't been on here for a while but thought I'd add my story. I was diagnosed with FFA this spring 2012 by my dermatologist. My hair and scalp problems began in the summer & fall of 2010. My scalp had been very itchy and irritated and I went to my regular doctor and she prescribed Derma-smoothe oil treatment, which you put on your scalp and leave on overnight. This was very difficult to use and didn't do very much good. I was using Neutrogena T-gel shampoo daily and it helped, but by later in the day my scalp was itchy again and driving me crazy. Went to my Dermatologist in 12/2010 and he gave me Clobex shampoo and clobetasol topical solution. These worked better but not completely. I also got shots of Cortisone along my front hairline. Around this time I noticed I had some hair loss at the back of my neck- a strip about an inch wide right along the back. I had bloodwork done which showed a positive ANA -anti-nuclear antibodies - which suggest an imbalance in my auto-immune system. I went to a Rheumatologist and they found nothing else wrong so they did nothing. I continued with the cortisone shots every 6 weeks - this was supposed to be for the inflamation. finally I quit going because my insurance would not cover it and was getting expensive. I was losing hair all around at this time but didn't really notice how bad until September of 2011 when the hair at my temples and front started falling out faster. I was just using the T-gel shampoo and the itchiness was not as bad now, just hair loss. In Feb & March 2012 I went back to the Dermatologist and showed him how bad it was now and he did a biopsy and blood work and finally diagnosed me with FFA. He said there were some Rx meds that might help but he didn't recommend them because of the side effects. So now my hair loss is about 2- 21/2 inches around the whole front hairline and ears, and seems to be staying that way. It's also thinned all around with a very thin patch on the back right side. I can cover it mostly with my remaining hair but am very self-conscious about it and wear a hat when I'm outside and it's windy. Sorry this is so long! I still use the t-gel shampoo daily and that helps with the scalp itch. I'm also taking more vitamins and trying to eat healthy in the hopes it will help. - Karen - also I am 47 yrs old.

Oh I forgot to say that the hair at my neck line in the back, did eventually grow back in, but the hair in the front has not. Thus - FFA. also a lot of my major hair loss times appear to be at very stressful times of my life. And now my ANA is still elevated and I've been having trouble with pain & swelling in my hands and feet - my doctor thinks this is Rheumatoid Arthritis. I'm sure it's all related somehow. Anyone else have RA??

With regards to your question of what meds I'm on I apply dermovate lotion twice a day and I take 1x Quinoric (hydroxychloroquine Sulphate)each morning and my reflexology lady suggested I take silica 4 times a day. I also try and do a high alkaline low acid diet ie. lots of veg and fruit. But unfortunately i don't think any of it is working. The reflexologist suggested I go and see a douser healer, but i don't think I will, I feel no matter what I do the hair will stop falling out when it wants too!

Pam, yes I've read about Lupus and they are some of the same symptoms so I have an appointment with a Rheumatologist to find out more. I also have thyroid problems and take synthroid for that. I had part of my thyroid removed about 7 yrs ago. Also have high blood pressure and am trying to lose weight through Weight Watchers. Lost 10 pounds so far but have more to go. With my feet hurting and swelling it's been hard to get much exercise. As if this is not enough, my 12 yr old son has moderate Autism and that takes up much of my time caring for him and my other son - 10 yrs old. I just can't afford to be falling apart quite yet!!! I'm hoping the Rheumatologist can help me figure out what's going on with me. I'm glad to know this group is here for support.

I know how you feel! I keep trying to put it into perspective, I have a lovely family and friends who will love me with or without hair, and i'm thankful its me and not my daughter, I couldn't bear her having to deal with it, with her whole life ahead! Talking of acid, over the past few years I've had a problem when I eat acid thing such as grapes blueberries or too much sugary things, like chocolate!I get an itching along my salivary glands from the bottom of my ear along my jaw line. It is an uncontrolable itch which i find hard not to scratch and it gets so bad it swells up so I look like a hamster!! This can all happen when I'm asleep and i wake up with the swelling. I've had dye put into my salivary glands and xrays taken but there are no blokages and the ENT consultant couldn't tell me what it is. So i've put it down to another allergy!

HI all,
I'm also an FFA'er. I was diagnosed this spring. Ironically I run a national organization for people with skin diseases and I didn't twig onto the fact that I had this disease until it had progressed to 2 cm loss, no sideburns and almost no eyebrows. Go figure. Denial is a powerful force. I have a few other skin conditions, all connected with auto - immune stuff, but I'll confess this diagnosis has hit me hard. I've registered to go to the CARF conference in Boston in a few weeks, just so I can learn more. reading all the posts here and in other groups, the whole thing seems pretty hopeless sometimes.
I find it interesting that this may be not as rare as previously thought. It may be a question of raising awareness in our communities- getting people to see their doctors - to register in. Once drug companies see that there is a larger 'market' for their products and doctors see that their work could affect more than a handful of people maybe research into FFA would take off...
just some wishful thinking...

I'm on the anti-malarials, and a trio of topicals but the plaquenil makes me sick to my stomach - persistent diarhea.. On the plus side I'm losing weight, but I do spend far too much time in the loo. I expect that I can't continue on this, and will discuss with my derm next week.

anyhow .. is anyone else coming to this conference in Boston?

Cheers, Christine

Hi Christine I would love to come to Boston but I'm in England! but it will be great having an 'insider' going who can collect as much information and keep us infomed!!! would't it be great to have some really poitive news! I don't know if within your job role of running the skin disease organisation, if you know of any data base that we could put all our individual information on so there might be a pattern or something that could give us a clue to why this is happening or what can be done!!Back to your medication I haven't heard of plaquenil is it a type of steroid lotion? I'm now on dermovate which is milder than Betnovate that I was on.

Sorry Christine I'm now on Betnovate which is a milder form of dermovate!!

Pam _ I'm about to get off plaquenil, because the stomach side effects are not sustainable... I'm not sure about the next systemic-- also bad side effects. On scalp itching.. I have no idea - the clobetasol lotion helps me. the itching is indeed crazy making as I feel that if I scratch or rub, I'm losing another hair. I've been told that isn't the case, but you can't help feeling like it is anyway.
Heidi - THAT is a brilliant idea. The Canadian Skin Patient Alliance ( www.canadianskin.ca)doesn't do anything like that currently, but perhaps its something CARF could take on, and if not CARF, then I'm thinking we might interest a number of Cicatricial Alopecia researchers to take this on in collaboration with a few of us.... how hard could it be?. Perhaps a research grant could fund the setting up of a self-reporting data base - online... it could be a model for all kinds of rare skin diseases, where treatment paradigms vary. We could launch it on facebook and create a website for it... By we, I mean a core group of FFA patients... or CARF.
With your permission, I'll float the idea when I'm at the conference. I'm connected with two of the Cicatricial Alopecia specialists in Canada. I expect each of us knows one of the experts in their country.IF we all think this is worthwhile we might each try and talk with our local expert and ask what we might include in such a registry that would be helpful.

ALL THAT SAID, I expect that optimal treatment for FFA is going to vary from person to person. From my work in the area of skin diseases, I've learned that there is no one 'best' medication for everyone with a given disease. Presumably the treatments that are currently being used for FFA have worked for some people. I think that the more we can find what is working for MOST people most of the time.. maybe it leads to greater understanding and better more targeted treatments.
I could go on and on.. what do the rest of you think?
Christine

HI all,
I want to weigh in on the ' at least its not cancer' conversation. I agree, its important to put things in perspective.. Indeed, its not cancer and we are not dying of this disease. However... and this is the common lament of skin patients of all types..is it does affect our lives and our perceptions of who we are and in some cases our ability to function as we would like. How we FEEL is actually important and by diminishing our feelings we diminish our right to them and that also makes us feel diminished - bad, guilty and shameful for even feeling this way. Shame is an insideous emotion - very damaging. I think it is important that we validate our feelings about this and don't negate them. Yes - its true that its not cancer, but we have a disease that will or already disfigures us.. that will make us the target of staring.. tough stuff in this appearance-conscious world. if we diminish it - 'its just a hair disease'- or 'its just a skin disease', then we de facto invite everyone else to diminish it and our feelings. We make ourselves less.
It is what it is. We are, to a large extent powerless and more so, because the condition is so rare. Line up all the negatives - pain ,itch, hair loss, being the subject of staring, medications that have debilitating and sometimes dangerous side effects, unknown comorbidities, misunderstanding, rare disease....let's validate our feelings and not be ashamed of them, and not let others suggest we should be ashamed of them.
A friend, when I told him of my diagnosis, said - "phew - I thought you were going to tell me something bad - like you had cancer." I told him that this was affecting me ...and he begrudgingly allowed me my right to these feelings. His point was - he doesn't care if I have hair or not. And that is another truth. Those who know us and love us will continue to do so. Those who are blinded by how weird we may look.. they lose out on getting to know us. Their loss.

I totally agree with what you are saying - it is almost like you went in my head and took my thoughts out. I also thought about it a lot and my fears are not about what the people I love and know are thinking. My fears are more about people who don't know me; the stares, the looks, etc. Now my husband tells me "who cares?", but I know I do. So, I will get some hair so that I don't have insecure feelings and get on with life. Now, where do I find hair?

Hello all, it is so good to hear that others have the same fears, unfortunately though. I think coming to terms with hair loss is like facing death as in denial, anger, grieving, and finally acceptance. I have also faced the same thoughts with my son who has autism. I still have many times of saying "why me" when it comes to my son's condition, but I know he has his whole life ahead of him and surprises me every day. In the same way, I have times when I wonder why I have been burdened with this hair loss and other conditions - possible arthritis, thyroid problems, high blood pressure, and realize that while I can control some of it, I can't control it all. I still try to do my best to look good, and style my hair as best I can, put on a little make-up and go out, but I'm still very self-concious, looking to see if people are looking at me and wondering what's wrong with me. In our world, we are judged by our looks, and if we don't look "right" then we are dismissed. I never wanted to be the center of attention anyway, but especially not now. Anyway, I think all we can do is to try to have a positive attitude and look for help if we can find it. My doctor who diagnosed me didn't give me much hope, and I'm not currently under any treatment for FFA. I don't know if there is anything that would help. And since my insurance won't cover it, I probably can't afford it. I haven't looked into wigs yet and I'm afraid of spending money on treatments that don't work.

In the CARF literature, they did say that it is possible to treat the inflammation and still have the hair loss. That is why they were looking into Actos to stop what is causing the hair loss (the PPARg gene going hay-wire). I am so excited because my wonderful dermatologist was able to reach a hair expert at UCLA. She said the gold standard was Plaquenil, which I am going to start as soon as I get my eye test done. I am also taking an acne strength antibiotic (doxy) and use Clobestasol (hair foam) as needed. Now the choice is whether or not to take Acots, too. Sandy, why does he think you only have a year of hair loss left? Karen, don't give up - meds aren't for everyone, but there could be a cosmetic solution that you could live with that will make you feel good. Tomorrow I am going to a wig expert who works with Alopecia patients. (I almost said victims instead of patient). I will report what I find out. Thank you so much for the support you have given me.

Haven't you all been busy! my computer has been playing up over the past few days so I've just got back on and there has been loads of interesting chat!!It's so nice talking to people who know exactly how your feeling. I went to a couple of wig shops the other day, but they weren't great, but I did quite like the idea of having a fringe and side bits. They only had synthetic hair but I know you can get real hair ones. I think as it gets worse I think I will use a hair band but I'm not dismissing the wig bits yet. I might use a fringe or bangs as you call them with a hair band to cover the join!

Christine sorry I'm so long in getting back to you. I will be writing to Dr Harries at the weekend. I don't know how sucessful I'll be, but I can only try!

You did make me giggle Pam! When I went to try some wigs on, I just felt exactly the same as you I've got a wig on my head!! i did think the fringe with side bits could work though, using a head band to cover the join. I think we must all be about the same stage of hair loss as I'm still not ready to take the plunge. i do wear hats and hair bands when its windy but most people don't know anything is wrong!

Pam to answer your question, the only changes to my skin is the lack of hair! I haven't needed to remove any hair from my legs since xmas, so there are some benifits! I still need to do under my arms though! My head and my hands seem to be hypersensitive, If I knock or catch them it is very painfull, but other than that I don't get an overly itchy scalp or pain any where, thats the ridiculous thing I am probably the fittest I've ever been since a teenager, I'm at the least stressfull time of my life and now my hair is falling ou,how does that work!
Hope the hair styling goes well next Thursday.
Sandy my doctor said to me that it will burn itself out but he didn't give me any exact time scale just a few years. I'm sending a letter to a doctor who is reseaching FFA so hopefully he might come back with something more positive,I'll keep you all posted!

I hope he answers you. I started Plaquenil this morning. The derm made it sound like if you can get the inflammation under control you can prevent further hair loss. However, everything I read said that even if you could control the inflammation, the hair loss can continue. That doesn't actually make sense -- why take all the meds then? I would just like to hear from one doctor that it is possible to prevent hair loss. I am like you, I am in the best condition in my life, with the least stress. The only thing now that is causing stress is when I do my hair. I am hoping that one day I will get to look in the mirror again and not think about going bald. Even though I may not look different on the outside, I feel like I have a secret on the inside that keeps me from being like everyone else. I look at everybody's hairline now. No one is safe.

I feel like my hair loss has slowed down but not probably done. I haven't had the red itchy inflammation in my scalp in a while now, but it still is very dry and I use a medicated shampoo to help control that. My hair texture has changed somewhat thought, it used to be very curly and thick, but now is thinner and flatter and frizzy on the one side that has had more hair loss, but more normal on the other side. Very strange! I haven't lost any other body hair other than a patch on one arm. I wouldn't mind not having to shave my legs! My remaining hair seems to still growing at a normal pace. My scalp is strange in that I have a small strip of hair growing at the front hairline and temples and then the bald part starts and goes about 2 - 3 inches back. That is the hallmark of the "Frontal fibrosing" type of alopecia according to my doctor. Is the same with the rest of you? I'm not doing any treatment for it since my dr said it was unlikely to grow back. I guess I should at least be happy that I don't have Universalis and still have some hair left. I feel also like I have a secret to hide and don't want anyone to know about. My husband & kids are supportive, it's just when I'm out in public or with acquaintences who I haven't shared this with that I'm uneasy. I know people can probably see the bald shiny skin under my bangs but I don't know what to do about it other than wear a hat. I'm not really ready for a wig or partial wig, or head scarves. That would just call more attention to myself. I can wear a hat outside it it's windy or sunny, but inside it would just look weird! and this summer has been so hot that I sweat like crazy and my hair just looks a mess anyway!! I can't wait for fall and cooler temps!!

Celia I did read the article it was interesting, i wrote to Dr harries at the weekend. i don't know if he will reply , I hope so! Karen, my hair line just looks like a mans receeding hair line. My fringe covers it at the moment, but it is getting thinner every day, not sure how long I can hide it for.The rest of my hair is growing normally I still have to colour the grey roots every 4-6 weeks!

Sandy, I added my profile pic (before FFA). Anyway, before I even had a diagnosis my friend recommended Bosley Shampoo. I bought a trial size to try it and it really does add volume and body to my hair. It is very expensive so I bought a trial 30-day size first at a local spa/salon. I liked it and found it on Amazon at a much better price. They have a formula for color treated and non-color treated. I will post wiglet pics next week (after stitches come out from the skin cancer).

My friends who went with me today said that the wiglet is hardly detectable. I will know soon enough I guess. It gives me just enough volume at the temples and bang area where I am thinning. I don't want to wait for it to become an issue so I am taking care of business now.

Here is a link for the product. My stylist is ordering it from this website and then we are going to cut and trim it so that it fits my haircut and hair. It doesn't feel any different than wearing a head band. Watch the product video.

http://www.wigs.com/product_info.php?products_id=4506

HI all,
I went to CARF this weekend and it was good. I'm a bit numb.. its hard to be in denial when you are surrounded by others with your disease. There were lots of women with FFA,a nd the news was that the docs are seeing more and more of us . they wonder if there is an environmental link... it seems more prevalent in some parts of the world than others.. or maybe people in other parts simply aren't bothered as much as we are.. who knows
It also seemed to me that there are two categories of people with FFA - those who are trying to fight it with whatever they can ,and those who have either given up and have had their disease 'burn itself out' - their words, not mine- and refuse to take anymore medications for it, except those to comfort the pain or itch. most of those are using hairpieces or wigs. there is alot of emotion around this disease,and many are finding help in local support groups that are cropping up. two others and I are starting up a group in Canada at the Skin Matters conference in Toronto in October, where we'll invite hair expert Dr. Jeff Donovan to speak to us about research as well.
one woma talked about doing a medicine life chart... documenting all the medications she'd taken in her life. Others talked about diet and environment. The doctors there hypothesized that there might be some environmental trigger, but also a genetic factor There are those who think that the way to find better treatment or a cure is via finding what 'causes' it and others who look to the biochemical processes involved and studying them to find a cure or treatments.
I left with mixed feelings. There are others like me, and there are some very dedicated people working on it, but I didn't sense we were anywhere close to finding a cure. There was laughter and tears and sometimes both at once. it was very good to be face to face with some lovely people.
I was also struck by how our experience is so similar to that of other patients with skin diseases.
I tried on a wig, I learned about hair pieces and weaves and met a woman who makes her own wigs - truly cool... I wasn't really ready to face that stuff yet... I'm a bit numb today.
that's my initial report. I'm sure I'll dredge up more int he coming days.

Thank you, CJ, for sharing your experiences. I was really interested in your comments about those who are fighting and those who have given up. Did you meet anyone who is actually winning their battle? I am wondering if it is even worth fighting FFA with drugs if the hair loss will continue.