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

Debs you look great! I've just shown all my family your pictures and you have given me such hope that a wig can look so good and natural!X

Debs - I really like the wig. I agree with Sandy that I am not a fan of the part on the fringe that I have. How does your part look?

Ladies I have spent the past year trawling through wig websites and waatching ladies on YouTube putting on wigs and discussing all things 'wig'. I am not of course an expert as I have never needed to wear supplemental hair before. But, the thing I have learnt is that the same as clothes sizing different wig manufacturers have slightly different measurements for their wigs. My head is too big for a Raquel Welch wig - I bought one, it was lovely but just too tight, however the Jon Renau wigs come up a bit bigger and they fit my head nicely. I also bought a very cheap wig for about USD60.00 and it was rubbish, I just threw it away. The general opinion amongst wig wearers seems to be that a lace front gives you a natural appearance - so that is the type I am going for. It looks like your own hair is growing out of your scalp, also lots of celebs wearing them for fashion, so even if somebody did think it was a wig you can pass them off as a fashion statement ie. Beyonce wears lace wigs and so do lots of young female singers. So, the natural parting is a lace front wig. I don't use glue or tape as the good quality brands like Jon Reanu, Raquel Welch, Amore etc.. are fitted with straps inside the wig you can tighten and as we all have our own hair you can just use a few hair clips for added security. My friend Michelle knew that I was wearing a wig and she kept saying that she could see my own hair at the front - that wasn't my hair it was the lace front... I have written a letter of complaint to my GP practice about the insensitive way he told me last December I have alopecia and the fact that he didn't off-set the bad news with any self-help info like this website and others for alopecians, also he gave no info on getting wigs on the NHS etc.. I don't expect him to apologise, he is a very arrogant guy but I hope he will be more gentle in future with any other ladies with hair loss. Have a great day ladies and thank you all so much for your support on this site, you are all a life-saver for me. XXXX

my eyebrows are tattooed on. I had them done last November, so they have lasted a year and the colour is still good. I have a tiny bit of eyebrow hair left but had to always use a pencil to fill them in. It did not hurt. I think it definately is worth doing. For any ladies in the UK there is a clinic in Chertsey, Surrey that provides this service, I did not know about it last year when I had mine done but they do a lot of work with ladies that have alopecia.. If anyone would like their info I have kept the details. XXX

Hello Ladies, I have found some other FFA folk on a webisite in the UK, the alopecia UK forum. I have asked a few of them what treatment they have and if it is working... One lady kindly told me she uses shampoos to help calm down inflammation; NIZORAL shampoo that is about £6, NIOXIN conditioner and sometimes another shampoo called POLYTAR. I have only just got this info so I can't say what they are like but it is a cheap option to try, I know it isn't a cure but if it can help control the inflammation it might be worth having a go.

Hi Debs. I've used Nizoral shampoo before and it's fantastic for scalp iritation. I have used it a number of times of the years and it's always worked better than any prescribed hair treatments I've had :o)

Morning Liz, now you have told me you have good results with Nizoral shampoo I will definately give it a go. Thanks, popping off to Tesco shortly to stock up.. XXX

I've been using Neutrogena T-gel shampoo for scalp irritation for about a year now. I've also tried Nioxin shampoo and conditioner but I use the t-gel more since it is less expensive. It seems to help control the itching and irritation pretty well. - Karen

HI All,
I learned at the Skin Matters conference that FFA can cause 'bumpy skin' or bumps on the face. I have noticed that my skin along the jaw line had changed texture over the last year and I assumed it was age related but apparently it is something often seen in FFA. Its kind of crepe- like with bumps that look like very small emerging pimples that don't go on to become pimples... hard to describe really. anyone else have this?

Funny you should say that CJ, when you look at my forehead under a light it looks as if I have got a rash under my skin. I wandered if it was to do with FFA, I was going to ask my derm next visit. Did you find any thing else interesting about ffa?

I have red spots between my eyebrows - on the bridge of my nose. CJ is it only on the face? I think I have a rash on my arms sometimes.

I think its only on the face, BUT who knows!!! The only thing I`m learning is that not that much is certain and lots is uncertain. I`m looking into tattooing!

Hello Celia, 'bangs' are a fringe in the US. The lady I had my eyebrows tattooed last November has a beauty salon in Richmond, she did a very nice shape and I am happy with them BUT... she did a block of colour and I have since seen people with individual little lines that look remarkably like real hairs from other salons. In my local paper there have been 2 articles about a lady in Chertsey, Surrey that is supposed to be one of the best, she does the little lines so it looks like hair growing and she has worked on the Olympic Gold medal cyclist that has alopecia...

www.belindahayle.com Belinda Hayle 01932 566776/07976

I have not used Belinda yet because my brows are still dark enough from a year ago but I will go to her when I need a top up.

Anti-malarials.... I have been in contact with a lovely lady on the Alopecia UK website who was diagnosed with FFA in 2006. She sent me an informative email detailing all the treatments she has tried. She stressed the importance of an early diganosis, before you lose too much hair and she did think based on her experience that maybe I would have been offered the anti-malarial treatment option at this still quite early stage in the condtion. My derm here in the UK, Surrey has not offered this... has anyone used/is using anti-malarial drugs, I know this is a treatment option for FFA but don't know why I wouldn't have been offered ?????

I was offered the anti malarials first but I didnt want them becuse the forst thing the doctor said was that can cause eye damage. He then told me that this was rare but I have problems with my eyes and so for me it wasnt worth the risk.

I have been taking the generic for Plaquenil. I was given a baseline retina exam - just in case. The eye doctor said that eye damage was very rare, and in fact, if I did have problems, the problem would correct if you stopped the drug. He also said it was very rare. In any event, Plaquenil takes approx 3 months to get into your blood stream. I have been taking the drug since the beginning of August. I don't know if it is working. I am interested in knowing if your contact who has had the disease since 2006 has had any relief?

Hi. I've just found this comment wall. Doh! I'm thinking along the same lines as Debs about trying to throw everything possible at this as early as possible. I'm really panicking at the moment as my hairline is getting pretty thin at the fringe now as well as losing a couple of inches each side. I've just had an appt come through to see Dr Harries, on 20 Dec. I know Celia is seeing him before then so it'll be interesting to see what she thinks of him. Feeling very low though, crying alot, which achieves nothing of course. Anyone had any counselling? I'm trying a meditation class which is great while I'm there but not so easy to try it with so much going through my mind at home. How quickly has hair gone from the front for anyone else?

Don't cry Jules. I cried a lot too and I do think the stress makes things worse. I just know that I am doing everything that I can to fight the disease. Taking meds, using clobestasol and I have even decided on a gluten free diet, which is recommended for people with auto-immune diseases. I have eliminated wheat and artificial sweetners from my diet. Don't know if it has helped because you don't know what it would be like if you didn't take all the meds, etc.

I am going to do the best I can with my hair until I need to wear a wig and then I am going to plop the best one I can find on my head and get on with life. Think about this - if you spent the day today crying and sad with your hair, then you have lost a whole day of enjoyment.

I think about all the days I spent worrying or fretting over something and the next day I found out I had this disease, which was far worse than anything I worried or fretted over. You don't know what tomorrow is going to bring so take the good days you have and enjoy them. Get out and take your mind off of it. Go do something nice for yourself and remember the people who love you, love you for much more than your hair. We are all here for you.

Hi Jules, we have all been there, I know when I first found out I cried all weekend, I cried at work, at home , with my family, alone in my bedroom I felt so helpless. Until you have tried every possible thing you can do, like the best dermatologist, the best shampoo, the best diet etc and you are confident that there is no unturned stone you haven't tried, then you get some peace. I know now that I'm not going to wake up one morning with my hair left on my pillow or that when I have a bath all my hair is notall going to go down the plug hole in one big swoop! I haven't got that feeling of complete doom any more, I know that I am doing what I can, it is still receeding slowly but life still goes on and if the worse thing happens then yes I will get a replacement, but at the moment I can hide it. I've just been away to Newquay for a cheap and cheerful weekend away with my husband and 6 other couples. We drank too much, we eat too much and we laughed for 3 days and not once did i worry about my hair, they wouldn't have cared if I was bald or if I was wearing a full wig, they liked me for me. Some of them know about my problem but half of them didn't know and it really didn't matter. You will feel better soon, I know you don't think so now but you will. I send you a big hug! Where are you as i live in Somerset.

Celia - it is a closed group on Facebook. If you click on the little lock beside the name of the group you will see it says 'only members can see the group, who's in it, and what members post' I think the only difficulty we are having is finding each other on FB. Who'd have believed there were so many Heidi Shorts in the world :-)

There was an article in The Times on Saturday about the increasing occurrence of acne in the adult population. In teenagers 80% of sufferers are male. For adults the ratio is reversed. It goes on to say that Androgens stimulate ..... and the division of overlying skin cells. If these rapidly dividing skin cells stick together hair follicles become blocked, trapping sebum inside. Do you think there is something environmental causing both the acne and FFA, since both relate to damaged hair follicles and both are relatively recent phenomena? Sorry the article isn't available online without subscribing to The Times.