My liver enzymes were not normal all summer - which meant that my body was not filtering correctly. Also just yesterday, I read that taking NSAID's may trigger Lichen Planopalaris. I know that there is an anti-inflammatory diet -- no sugar, sugar substitutes or animal fats. I finally have an appointment with a derm who treats alopecia. The first available is November 30! Can you imagine having to wait so long? CJ - how is the conference coming along?

Gave up wearing my topper. Too hot and everyone said I am crazy -- don't need it yet.

Did you ever notice how many ads (commercials) there are for hair products on TV?

Oh my gosh , its so hard to know what to do... Pam - derms who treat alopecia are rare... its a problem all over. although most say they treat it, very very few specialize in it. Its crazy making.
As for the conference - I think it will be amazing> i'm hoping that there will be people with FFA and LPP ( which I also have apparently). We will have one of the top alopecia docs in Canada there. He is doing work with the international alopecia research community.
Liver enzymes.. hmm. that suggests something else beside FFA is going on, doesn't it?
I don't know about diet.. although at the CARF conference the research derms there - most notably Vera Price, said that they now believe that FFA and the other cicatricial alopecias are NOT automimmune like AA, but likely reactions to environmental triggers. therefore , all of us, at some point in our lives, maybe recently were exposed to something that triggered some aberrant part of our DNA to start the attack on the sebaceous glands and stem cells around our hair follicles.
I'm on another on line forum on Facebook for LPP and a bunch of people are on the paleo diet and some ( but definitely not all ) report that they have hair regrowth and fewer symptoms - redness , burning , itch- while they eat that way.
I don't understand how there can be hair regrowth - either its dead or its not dead.
i think the anti-infalmmatory diet approach makes sense.. I just can't bring myself to start tinkering with diet. I struggled with weight and diet issues for years and part of my cure was to stop dieting. My weight is fine.. i'm not skinny but I'm normal- ish and i'm afraid to start restricting food again.. it messes with my head... the inside of it, I mean.
ellauk - when was the book you are referring to written.. I wonder if the newer research trumps it or if it is the newer research?

I too am wondering if acceptance is part of the journey. I'm not there yet, but am inching closer. I'm not sure I'm willing to take all kinds of toxic drugs. I'm on plaquenil and it makes me sick. Doxycyline makes my skin all over really itchy.. I had to stop it.

that's enough chatter for now.
if you can come to our conference- anyone - I'd love it!

The book The Autoimmune Epidemic was first published in 2009 I think. I'm starting to think that a detox programme, including chelation.... proper detox is the only way forward for FFA. Anti inflammatories and stress management only treat the symptoms but not the cause. Sometimes I feel like shaving my hair all off. But I would have zero chance meeting a man then! ha ha

Hi everyone, it's nice to read all the comments. I guess that my FFA is probably related to auto-immune issues, but of course, I don't know that for sure. Last month I was having alot of trouble with my hands and feet hurting and my feet swelling up and being really uncomfortable. My regular Dr. sent me to a rheumatologist and he thought it was a reaction to my blood pressure meds and to take only 1/2 my regular dosage. And that seemed to help. I thought it was going to be rheumatoid arthritis, but maybe not. Ella, it's interesting that you are going gluten-free. I have looked into that but mostly because my 12 yr old son has autism, any many in the autism community think that following a gfcf diet has helped their kids. We tried it a few years ago, but it was hard since my son is so picky. But I would try it if I thought it might help with my hair loss. But I know the hair I've lost at the front is not going to come back. So I've mostly accepted that. Many people think that autism is caused by environmental toxins also. But in my son, it think there is a genetic factor too. It's all just so confusing isn't it?? I hope in my lifetime, some researchers can find a cure for all of these things.
I also wanted to say that I live in Iowa, in the midwest of the United States, and I have never travelled to the UK. But the neighborhood I live in is called Wilshire Heights and the streets are called Somerset, Essex, Victoria, Surrey and I live on Dorset Ave. I just thought that was kind of funny with so many of you being from the UK. Bye for now, Karen

Hi Everyone, am having a biopsy in a few days with a dermatologist to cnfirm FFA. Went to GP in Dec, very brusque and unhelpful. Just told me I had alopecia, didn't diagnose what kind, said no cure and sent me packing. I tried to get help at a private hairloss clinic in March, the lady there diagnosed FFA and told me to get a biopsy... It has taken since March for the NHS to give me an appointment. Since then I have lost about an inch from my temples and half an inch from my front hairline. I have purchased 2 wigs. Wore them both out last week for the very first time. I am trying to find and get used to wearing wigs now - so that in the future when I will have to wear them all the time I will have already done my experimenting to find something that is comfortable and looks OK. I have been told by the dermatologist that he will give me a high dose of a steroid cream!! I can see however that there are a myraid of treatments being tried and nobody seems to have a definate 'cure'. I know that for other types of alopcia some people have sucess with minoxidil... has anyone tried that? I am very interested to learn more about changing my diet to try and control the inflammation; but I don't know what foodstuffs would be a cause of inflammation to begin with... any info is most gratefully received. And, good luck Celia with your move, I am just up the road from you in Surrey, it is a lovely part of the UK you moving to. Debs xx

Debs - I would say I am at the same stage as you. I too have lost an inch from my temples in the last 6 months, and a bit less from the front. How did you go about purchasing the wigs? Living it rural Scotland I would find that quite difficult. Did you find wigs very like your own hair? How did people react when you wore them? Dr Matt Harries of Manchester University was quoted as saying that steroid cream is much less effective than steroid injections. Cream is difficult to use anyway - difficult to know how much of the head to put it on, and the hair needs to be washed afterwards. I have seen online that some sufferers are using Propecia - unfortunately not licensed for women in the UK.

The group might be much easier to get into if more use was made of Discussions. We could have discussions on wigs, medications, new research etc. It is frustrating trying to follow the different conversations that have gone on in the past. And, if I find something interesting weeks back, there's no function to comment on it or ask a question. I hope you don't mind this comment. I know we are lucky to have this meeting place - thanks for setting it up.

Hi ladies I've just had a reply from Dr Harries!This is what he said
As I am sure you know this conditionely is relatively rare and causes permanent damage to the hair follicle.I have recently undertaken some research looking at the changes to the immune system in active disease and this suggests that the hair follicle may lose protective mechanisms exposing the stem cells to inflamation and damage. There are a number of similarities with this pattern of inflamation with other auto immune conditions, although FFA to date has not been designated in auto immune conditions.There has also been research on a similar condition, lichen plano pilaris, in America which suggest that a lack of PPAR gamma in the skin may be a contributing factor. (I don't know what that means!!!)
Treatment for FFA is difficult and there is no clear consensus on the best treatment option. It is likely that the condition probably does burn itself out at some point but it is difficult to predict.
He goes on to say he thought the idea about a database was a very good one,infact he is currently in the process of applying for funding to set up a National Scarring Alopicia database, which will cover a number of scaring conditions including FFA. The plan is that this will collect data going forward about natural history of these conditions and also link this data with tissue samples (eg blood or scalp biopsies).He is also currently undertaking a questionnaire study in FFA and it is possible we could be involved with it.
He also wanted the name of our web site as it could be benificial to other patients, so we could have a few more members soon!
I was really pleased that he answered my letter, although no miracle cure yet, there was a few new suggestions on why it is happening, and encouraging that they are actively trying new ways to collate data.

This is great news. Personally though I don't think it is so rare. You seem to see quite a few people with jagged, thin hairlines. I personally think turmeric and green tea help lessen inflamation. I don't know if other people find that too.

Great that he took the trouble to reply. Somewhat depressing too, as his response in the newspaper article was the only positive one I've seen on much searching of the web. Now it seems he has no more answers than anyone else. At least if he gets his funding (and data from us) there may be hope for future victims. Any results would be too late for us, I fear. Thanks for copying the info to us.

Ella - I have drunk a mixture of green tea and ordinary tea for years and it hasn't saved me from this :-( I think I will give the turmeric a go, though. Also taking a mixture of Omega 3 and Omega 6

PPAR gamma is a gene, which they think goes haywire and may cause the inflammation. I believe the thinking is that the gene malfunctions due to improper processing of our lipids. Actos is an inhibitor which supposedly keeps our body metabolising carbs and fats properly.

This is why I always thought my low carb, low cal diet might have triggered something. Some people have had success with Actos and some have not.

I am wondering if there could be more than one trigger, which is why some drugs work for some people and not for others.

Anyone else see Rosa Monckton interviewed on BBC news tonight? Her hair looked just like mine. For those not in UK, she was a friend of Princess Diana and a great campaigner for disabled rights, I wonder if she has written anything on twitter about hair - I don't twitter myself.

What are your ages? I am thinking that I might be very much the oldest (I am 66), but I have had this disease probably less than two years like the rest of you.

I'm 48 and I was 43 when I started going through the menopause. It's early I know, as my sister who is 3 years older than me is still having periods and she is 51 now, I haven't had one for 5 years! I thought I had early menopause because I smoked up until I was 43, but now I think perhaps this is all connected!
Mairi I looked up the Rosa monkton interview and I agree it looks like she has our problem, I'm not on twitter either so I can't check if she has written anything, I looked on the internet with her name but I didn't find anything.

I am 47 and have been dealing with this for about 2 years now. I'm not in menopause yet but probably heading that way.

I am 55 and noticed my eyebrows and hair loss in March of this year. I got the official diagnosis in July. I don't really know when my menopause started - it seems like forever.

I am 52.. literally going through menopause at the moment. hot flashes.. missing periods etc.. cranky too.

Hi all,
I'm 57. . . started noticing the lack of eyebrows two years ago. Had a hysterectomy when I was 46. . . I had my ovaries out as well. I was wondering if that had anything to do with it, but some of us are just going through menopause so that's not part of the equation. hmmmm. . . Live in an urban area (Chicago), don't smoke, drink in moderation . . . maybe it is all the diet soda I consumed over the years!? :-) There is a history of some conditions in my family that are thought to be autoimmune . . . Vitiligo, ankylosing spondylitis, eczema. Not sure if that is related, but wonder.

Hi Ladies, I am 49. I noticed that my eyebrows were falling out (and not growing back) about 18 months ago. I had my eyebrows tattoed last year, I still have a little eyebrow hair but not much. I have not gone through the menopause yet, however I only menstruate about 3 times a year so I am heading that way. I have not heard of anybody having FFA that is in their 20s or 30s... so maybe it is linked to hormones changing as we age..

My derm knew it was FFA as soon as I told her about the eyebrows. She called it Post-Menopausal Front Fibrosing Alopecia - and doctors do believe that there is a hormonal trigger. Chris, I had a hysterectomy but my ovaries were left. That's why I was never sure when menopause started -- but I have to say that my hot flashes were really, really bad this year.
Also, every one of my siblings and my parents have or had autoimmune diseases - diabetes, Chron's, and Pemphigus. I thought I was going to be lucky. I am an ex-smoker but I don't really drink - only an occassional glass of wine.

Today I went to Dundee for an appointment at Fernbrae Hospital. The dermatologist there said that FFA is now quite common. He has had many cases - in the majority of these it has burned out within 2 years and most of his patients have not needed cosmetic enhancements such as wigs. He is against steroid injections - said that, while they may give the impression of being successful in some cases, it is likely that the treatment has coincided with the disease burnout. He has prescribed only Clobetasol for me, which most of you already have. He looked at my scalp with a small device - wish I had asked what it was - and said the evidence he saw of inflammation led him to think that my disease was beginning to burn out. He has given me a note for my GP to prescribe Clarelux shampoo(clobetasol) or Bettamousse. He said that these are not readily available in the UK, which is why he has given him a choice. I have to return to see him in two months. I do not know yet what the consultation cost - they will send a bill. You can be referred to him by your GP, but medecines will be at the NHS rate since he notifies the GP of what to prescribe (free in Scotland). His name is Dr Colin Fleming, Consultant Dermatologist and Mohs Micrographic Surgeon, BSc, Mb ChB FRCP. He was incredibly nice and gave me such confidence, which I hope is not misplaced! :-( I had printed out a lot of the comments from our forum and he very patiently read them. If any of you fancy going to see him, Dundee is on the main rail line between London and Aberdeen. The hospital is Fernbrae, 329 Perth Road, Dundee.

the device was likely a dermatoscope - essentially a high powered magnifier...
I'm in the middle of menopause. My scalp whcih was only a bit red 6 months ago and just a wee bit itchy is now really painfully sore and itchy. I've lost more hair....

I met some people at the Boston conference who lost alot of hair before the disease 'burned out' . If it is associated with menopause or hormones, I wonder if using HRT could help? I'm looking into that. They've cleared HRT now.
I don't smoke, drink wine almost daily am 5'1 and 145 pounds. My extra weight is most certainly from the wine. I work too much, live in the city, don't drink diet sodas, but used to.
I also have eczema, some small patches of psoriasis and worst of all, lichen sclerosis and atrophy--- all somewhat immune - inflammatory diseases. I should try the anti- inflammation diet.. but I can't bring myself to try another diet. I'm hoping to learn more at the conference next month.

C

Thanks for dermatoscope info. I am same height and almost same weight as you - the latter due to my love of cooking (as well as wine!). I no longer get enough exercise - I am not so keen on walking out or cycling because of the hair problem. This may change as I can wear a hat in autumn/winter. I have always tried to buy good ingredients - we are very lucky here in Aberdeenshire. I do always try all the small shops first before I resort to the supermarket. I never buy ready meals and have never used canned drinks. I did use HRT for the number of years allowed here (can't remember how long that was). This may account for the fact that my onset of FFA seems to be later than others. I have in the past had small patches of psoriasis, but they have now gone. My sisters have asthma and one has eczema.

Hi, Chris. I have been taking Plaquenil (generic) since August and sometimes I am itchy (hands) but I take a Zurtec and I get through. I am going to ask about Protopic because my doctor did say Clobestasol can cause skin thinning. I will ask about Protopic but I doubt if insurance will cover the cost. They only pay for generic drugs. Enjoy your MAC!

Mari - you have really touched my heart with your heart felt feelings about our disgusting disease. So far, the only good thing that has come from all of this is meeting (virtually) all of you.

Celia - you sound like you have so much spunk. What are antinflammatory tabs? I think there are probably many triggers for FFA -- hormonal, environmental and diet and that is why what works for one person doesn't work for the other.

CJ - I cannot wait until you have your conference. I have been reading about all the diets that people have put themselves on (paleo and anti-inflammatory) and I just can't help but think that some of it is almost a cult. How can a diet high in animal fat (paleo) be healthy? I am trying to cut out gluten and see if that helps. But I think sugar and artifical sweetners aren't good, too. Pay attention to how you feel on days when you don't have sugar or sweets. Do you feel different?

I am so happy to hear that this burns out!! Sandy -- didn't you say you thought you were at the end?

Hello all. I just wanted to add more of my info. I have been dealing with this since October of 2010, almost 2 years. It started with the itchy dry scalp, finally so bad I went to a dermatologist. He gave me cortisol shots several times and Clobetasol shampoo and liquid treatment. Then it progressed to hair loss all over and a strip in the back of my neck which did grow back. Then about a year ago noticed the hair at my temples pulling out with just a tug. It was a very stressful time as my husband had just had a mild heart attack and was in the hospital 2 days. Then it seemed like before I knew it, my entire forehead, temples and sideburns were gone. It's now about 2 - 2 1/2 inches back, maybe more in spots. I think it has mostly stopped - burn out I think. My dr diagnosed the FFA in March of this year and said there was nothing I could do about it; that the hair follicles were dead and would not grow back, but that it would eventually stop. So now my hair is much thinner -thinner on my right back side and thicker on the left. My eyebrows don't seem to have been affected so far. I do have a bare patch on one arm. I style my hair with my bangs longer & brought to the front to hide my ears. I've gotten used to wearing a hat when I'm outside and it's windy. Have not looked into wigs, but not really wanting to do that unless it gets much worse. I have been trying to eat a healthier diet, low fat, less artificial sweeteners- even gave up my favorite diet soda!- more water, fruits, veggies, whole grains. I have lost about 10 pounds and still working on more. I would try gluten free if I thought it would help. I have a little arthritis in my feet, thyroid problems, high blood pressure, not yet into menopause. I'm 47 and a stay at home mom of 2 boys, 10 & 12. I really just want to not let this rule my life and to stay active with my kids without worrying about my hair! My family -sisters - know about my hair loss but if they saw how really bad it was, they would probably be shocked. Unless it's more obvious than I realize?? I'm so glad I have found you all here to spill my guts to. It helps to know I'm not alone.

Sandy - will let you know how much it is when I get the bill from the consultant I saw. You would certainly get an appointment up here much more quickly. I only waited 4 weeks - might be worth a trip, but I don't think I know where you are.

Obviously not worth a trip, then :-(

Lots of messages tonight - just shows how well the group is working. Can't thank you enough, Celia.

Hi everyone sorry I haven't been on line for a while. I've been busy at work and although I have kept an eye on whats going on, I've just felt I've got nothing important to say!I think I'm coming to realise that its not suddenly going to all fall out. I still think people don't notice it yet unless I tell them. I think I'm a bit different to some of you as I've told loads of people about my problem! I don't know if its because I want to get my side of the story in before they notice my receeding hair. They all say they wouln't have noticed unless i said, or are they just being polite! At the moment i don't feel so depressed about it, I'm not happy about it but its not overwhelming me like it first did. I do know that having this group has really helped me,just having somewhere to sound off or find out the newest info, so thanks ladies!! I'm going to see a different dermotologist in a couple of weeks so I'll keep you updated.

Glad you are doing well, Heidi. I am like you -- I told a lot of people. But, I am selective about the people I tell. I don't want to talk about it all day because then I never get a break from it.

I actually was thinking of all of you today, because I have had an awful day. Burning, itching; and not just my head -- all over my body. Plus I have seen lots of hair flying all over the place today. The only thing that I can think of is -- I had a flu shot yesterday.

I have tried to be gluten free for almost two weeks. I don't think it has made a bit of a difference. Just makes it harder to go out to eat with my husband and friends!

I am miserable tonight. Hopefully tomorrow will be a better day.

I'm sorry you had such a bad day Pam, hopefully you'll have a better one today! I must say I don't get the burning or itching on my head, actually saying that I do get this terrible itching in my salivary glands, I wander if its part of the same thing. I have been to see specialists ear,nose and throat doctors, I've had exploritory tubes and dye passed through my salivary glands and xrays taken, but nothibg is found, they put it down to being allergic to something! So I take antihistamines most days, I suppose with our type of bodies, its all to do with our sensitive auto-ammune systems but I wander if its more relivant to having FFA.(Thats one to ask the dermotologist in a couple of weeks!) Well keep your chin up ladies, it's good to talk! X

Today is a much better day. I am not as itchy and don't have the burning feeling. I just wish I knew why today is different than yesterday. What makes one day worse than the others? Thank goodness for the good days!

Hi Everyone, I hope your grandchildren didn't wear you out yoo much Celia! This is the address I used when I wrote, Dr.Matthew Harries, Consultant Dermatologist,Dermantology Unit, Salford Royal NHS Foundation Trust,Stott Lane,Salford,M6 8HD. This is the email address that came back with the reply,Jean.Brock@srft.nhs.uk but I haven't had a reply from the email I sent him, so i would say you are better writting to him! Celia I did the same as you this week, I've been using the expensive Philip Kingsley itchy scalp shampoo conditioner and tonic but I ran out so I also used Tresemme. I might get some T Gel shampoo/conditioner as that is good for an itchy head and would probably be good for inflamation and a hell of alot cheaper!! The philip Kingsley one is nice but I haven't seen any great improvement really, well time will tell!

So sorry, Pam. Will you get some time off work for your broken foot? I hope so. How did you do it?

Here is the awful photograph! You can see how far back my hair is thinning. And the hairdresser has had to use hair from quite far back, but I think he has been very clever, I think it is at the limit, though. In reply to others, the exposed skin is very pale and doesn't tan.

Mari, your hair cut looks like mine now. I think it looks great. We are so critical about ourselves! Sandy, I am so proud of you! How does it look? Do you like it? It is easy to wear isn't it?

Last May I hurt my foot at school stepping down from the school bus while on a field trip with the kids. It felt bruised for a few weeks but started feeling better over the summer. Last night I hit my foot against the cabinet and I guess that's all I needed. Dr. wanted me off of it for 6 weeks. I explained that elementary school teachers can't go on crutches for 6 weeks so he gave me a boot. Hopefully, I will be able to return to work in the next few days.

Sorry about your foot, Pam. Hope it is not your right foot. I broke my right foot last June and did the boot and had a cute scooter to get around. The kids in the neighborhood were so jealous. I think it was called a Roll-About. The worst was that I couldn't drive. It doesn't take much to break those little bones in the foot. I was wearing cute shoes to my daughter's college graduation and wasn't watching where I was going and stepped into a sizeable crack in the sidewalk. . . and "pop" I felt it go. First bone I ever broke.It doesn't hurt much but does take 8-12 weeks. I'm wearing heels again but had to do flats all winter. Good luck!!

Sandy, if I wear mine I will have to wait for a break like winter vacation otherwise all of the kids will notice and I won't have a minute's peace.
Chris it is my left foot. I actually drove myself to the hospital because I didn't want to wake my husband up - it was 2 in the morning. Right now even with the boot it hurts like crazy. When were you able to put weight on your foot? I can't get around my classroom in a wheelchair. I don't know what to worry about first - going bald or being lame.

Hi everyone is it me or is this web site having a few blips! I wrote on the wall 16 hours ago and it hasn't come up, but it has when I click on my own photo. Also it doesn't do all the conversations in order, I go from two days ago to now and then 6hours ago!!

Hi, Heidi. I agree. I am having trouble following posts since we started making use of the Discussion pages. I would rather just follow along with the "Comments" page.

Has anyone heard from Christine? She was having a big conference this week. I can't wait to find out what she heard.

I do like the discussions because of the REPLY box - someone coming late to this site can then follow a conversation through on one topic. This page would be fine if there was a way of commenting on a specific post, rather than just adding to the list of comments. There is a problem with the discussion pages, though, in that when you get an email with a discussion comment, it seems to take you to the top of the discussion, instead of to the specific comment you are looking for. Even if we do decide to stick to this page only, I do think we should keep all the Meds comments in a discussion, for the sake of those who are unlucky enough to join us in the future.

I await with interest where this reply will appear :-) Might be an idea to ditch the whole thing and set up a Yahoo group which will work properly with threads, FAQ etc.? We could copy and paste all the useful information people have found. I don't know if it would be worth contacting the webmaster for this site - it really doesn't work as it should.

Hello Ladies, this damn webiste, needless to say I didn't intend to post the photo of me closeup and wigless (was trying to just do it as an attachment.. anyway, this is me 11 months after I first noticed 2 small bald patches at my temples. This photo is me in my lace front wig. I have really got fed up with my hair being unstyleable and have decided just this morning to use wigs and headbands etc.. now to cover this head of mine up. I have spent quite a lot of time and money this summer buying wigs and accesssories (wig stands, shammpoo etc) so I am all set. Trying to stay positive. XX