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.

Some dogs, especially poodles, get a disease called sebaceous adenitis(SA) in which the sebaceous glands become inflamed, leading to progressive loss of hair and scaly skin. Some websites say that the hair grows back after treatment - dogs are more fortunate than us humans!

I have virtually no hair on my arms and legs. I think this went pretty quickly - not a gradual retreat like the hair on my head. Does anyone else agree? If so, it would be interesting to know Dr Harries thoughts about this.

Jules - yes I was trying the 5:2 fasting diet. I have not done it for the last two weeks as I've had a really bad cold and haven't felt up for it. I did see it being recommended in a newspaper, with the proviso that we should eat a healthy 2000 calories on the non-fasting days. I do really like it. I do put on weight very easily and find it easier to fast two days rather than be constantly watching what I eat. Who knows if it affects the FFA? Website is playing up again - can't see any 'Reply' boxes :-(

Can anyone else just pull thier hair out at the front? The doctor pulled a handfull out when I saw him and I didnt feel it. I guess thats how he assessed with the condition is active. I try to leave it well alone but this morning I had a little pull just to see and I can pull it out as easy as anything. Just from the front. The back and side behind my ears are stuck fast!

Hi Ladies, I have lost the hair on my arms and legs, it happened very quickly and to be honest I didn't really notice it until I saw the loss of head hair last December. Celia, the tattoo lady knows what you want.. a natural looking eyebrow, she is used to treating people with alopecia. You have a consultation when the do the treatment and they discuss at length the shape/colour etc you want. I bought some St Johns Wort about 10 days ago, I feel very anxious and wanted to try a natural route to help myself. I do find I wake up in the mornings and for a few seconds think I have just had a nightmare where I have imagined I am losing my hair... then reality dawns on me that it is real. I think this is the most difficult thing I have ever had to deal with in my life because it is happening in slow motion, other upsetting events have tended to be quick, like bereavements, whereas this FFA is very very drawn out. The lady I made contact with that I mentioned in my previous post (that was diagnosed in 2006) has used just about every treatment going and she unfortunately has had continued hair loss. I found a nice website yesterday in the USA, www.coveryourhead.com. I have ordered 5 nice wide headbands, I have headbands that are 3.5 inches but my front hairline had receeded pretty quicky in the last 3 months so I wanted to make sure I have even wider headbands at home to wear to the gym in case it all speeds up even more. I have a horror of being caught out and not having anything to cover my hairline with. I too am really interested to see what Dr Harries can tell the Celia, if he offers any other treatments we can all have a go at it. Have a good day ladies, I am making sure I still go to the gym to try and work off some of this angst. XXX

Celia, I have asked questions on a couple of other alopecia websites about plaquenil (anti-malarial drug). 2 ladies in the USA have said that they used anti-malarials and it did help the hairloss. Can you please run this past Dr Harries, also 1 lady said she used Vitamin H - Biotin - this was presecribed by her derm. Ta v much.

Mairi, I have lost most of my arm and leg hair, I haven't needed to wax my legs since last xmas( FFA has some benifits!)
Liz you can pull the hair out easily as the hair follicle is damaged, I can do the same to the odd eye brow hair that I've got left. They grow in a weird way, different directions and some not even on my brow!
Debs I've been on anti malarial tablets (Quinoric 'hydroxychloroquine Sulphate')since May. I've had no problems with taking it and I'm on it until Febuary when I next see the derm!

My hair has receded about 1 and a half inches since Christmas and another 1 and a half inches behind that has thinned. Also I have lost a lot from my temples and half of one eyebrow.

Thought I'd update my photo as the last one was taken 2 years ago,this was taken a month or so ago. Its only taken me 30 minutes!!!Jules as I have said before I noticed my hair was receeding in January and now mine has probably gone back 1 inch at the front but the side bits ( the bits where men receed each side of the fringe)has gone back alot further probably 2.5 inches. My fringe still covers it as long as there is no breeze as you can see by my new photo!

Question for Doctor Harries - In patients where he has seen the FFA burn out, how likely is it to return?

If anyone is worried about privacy on the Facebook page, perhaps its better to turn Notifications 'OFF' and just check out the page from time to time. If you leave yourself logged on to FB, as I often do on my ipad, people can (partially) see the FFA comments in the Notifications list.

Jules you don't need to get a custom made wig (unless you want to) an average size wig will fit 95% of people and you can loosen/tighten it to suit your head with little straps inside (ike a bra strap to get the picture but much smaller!) because we have a medical condtion we dont have to pay VAT - so online you can order and wig and ask for VAT to be knocked off.

Celia, another question for Dr Harries... a lot of us are using steroid lotions (dermaovate and betnovate etc.) is it safe for us to use steroid lotions for a long period of time? We all seem to have been given instructions by our derms as to how long to use them for. Many thanks xx

Hi all, I have a few comments to these discussions if I can figure out HOW to comment - I am new to this.
I was diagnosed with FAA 10 days ago and it seems I must have had this for some time. Loss of hair on legs and arms for many
years, loss of eyebrows 2 years, which really was upsetting. I kept asking my dr about it and she would say ... It was just part of getting old!!!! My hair loss is 1-2" and I was so ignorant about what was happening that I just ignored it.
2. My dermatologist put me on Hydroxychloride (anti-malarial) med and the steroid med, . I was very reluctant to take the Hydroxy.... because of the MANY MANY side effects but learned that the eye problems only come after long use. My dermatologist felt that it "might" stop the loss and was worth a try. Does anyone else take it and have they had side effects???
I have been sick (stomach related) for 10 days but decided to
keep on it for another week or two.
It is amazing how upsetting this is and how noone else thinks it is a big deal - there are so many emotions popping up!
3. I am supposed to swim for excercise but this also bothers me.
Does anyone else swim and how do you handle it??

Hi Judy, Welcome to the group. . . even though we wish it weren't so, this group is a great source for sharing and questions. Our experiences are all so similar and it helps to get a few answers. . . even if it isn't as definitive as we would all like. I was diagnosed through biopsy just about exactly a year ago. I felt sad, disappointed and numb—started with Minoxidil, Finestride and Clobetasol(steriods). The steroids were applied with injections and the solution.It may have slowed things a bit, but skin where I was applying the steroids got quite thin. My dermatologist was not as experienced with hair loss, I changed doctors in September to Dr. Barbosa who participated in the CARF symposium and has more experience treating cicatricial alopecias. She put me on Protopic anti-inflammatory cream as well as the Hyroxychloride. The Protopic has really diminished the redness and supposedly the hydroxychloride takes several months for to start working—so I'm waiting on that. I take it right before bed and try to have a small bit of food with it—like a 1/2 banana or alittle yogurt. So far I have only had one instance of nausea and it was taking on an empty stomach. Too early to tell if it is working.
I'm 57 and like you, didn't really pay much attention to the receding hairline but really noticed my eyebrows initially. Thought it was hormone - related so raised the query with my gynecologist. Her response. . . that's what they make eyebrow pencils for. Really. Anyway, the timing sounds exactly the same—about 2 years of eyebrow loss, no real redness or obvious follicle bumps, overall hair thinning and finally noticable receding hairline in photographs.So it has been a year of ups and downs. I style my hair with bangs now and even get compliments on my new style. So, I feel like I'm in a holding pattern now. . . I'm not as terrified.

My dermatologist told me to use the Clobestasol solution once/day or every other day. The scalp where I apply it immediately cleared up but now I can see how terrible\y thin that area is. Pam, my dermatologist is in Hillcrest and she has one another patient with this. She also said this usually affects women with diaabetes or postmenopauseal. She was suprised when I said I went thru that 30 years ago when I was 40.
Right now I am in Palm Desert and will try to find someone who "specializes" in FAA - Pam, I will interested to know what you think of your dr at UCSD>
Chris, I can't believe the comment your dr made-really professional. I guess they just don't know anything about this.
I think my dermatologist said 2 months also to see if it is working. She took lots of photos. The nausea is really bad and I am taking the 2 pills at night w/food. It comes and goes, and gets better if I keep something in my stomach every hour or so-like applesauce, rice, 7up, etc So much for the diet.
Two years ago, when the eyebrows started, I began taking Thyroid pills and biotin (vitamin) plus using biotin shampoo. Obviously
those things did not work.
Your comments are appreciated. Pam, my email is Jkeller39@aol.com

Chris, I also wear bangs, glad that is working for you. Because of that I probably did'nt notice the hairline. I started wearing them VERY long to cover the eyebrows - I am terrible at applying pencil - Now that I know what this is, I will look into the tatooing and finding someone who can do the individual lines so it looks more natural. In the meantime I have been using Clinique's eyebrow powder when the bangs get cut too short.

I am only taking 200 mg of Plaquinil once per day. Are you both taking a total of 400 mg per day?