Liz, 'yes' my nails are different now. I had not noticed until I saw Dr Harries last Friday, he looked at my hands and asked if my nails had always had ridges, I hadn't noticed them before as it isn't very pronounced. I have since looked at the CARF website again and there are photos of finger nails with ridges running top to bottom for people with lichen planopilaris - and FFA is a variant of LP. My nails are strong and always have been so the ridges are a sign of my FFA but don't bother me. My eyebrows have not lost any more hair for over a year, I do have semi-permenant makeup on them but I can still see/feel my eyebrow hair and it hasn't grown back but has not shed since about November 2011 and I have not applied any creams to it.

Jules, are you also on the hydroxychloroquine sulphate?

Hi Simone. Im not sure that I was taking them long enough to know either way. I was prescribed 8 weeks worth of medication and I took 5 weeks worth. I wasnt given another appointment until this June which means that there would be 9 months between appointments anyway. Who knows! Im off to see Dr Harries in a couple of weeks so hopefully he'll be a bit nicer than the doctor I saw. I dont even care if he does nothing for me just so long as he is nice :o)
x

Lest we take ourselves too seriously, I have 2 new theories about FFA:
(1) One is based upon the sci-fi series "Dune" by Frank Herbert. We are all turning into powerful priestesses called Bene Gesserit. Somehow, we've been getting the drug melange in our diets, which gives us superhuman mental abilities but also causes our hair and eyebrows to fall out. See http://en.wikipedia.org/wiki/Bene_Gesserit
(2) The other is based upon the ancient science of Physiognomy, which claims that a high, wide forehead is a sign of intelligence and open-mindness. See http://ssdivining.homestead.com/Physiognomy.html
Both of these theories suggest that we are all evolving into smarter and more powerful women. Unfortunately, neither of these theories accounts for the bumps and itching. But I'm working on it.

Celia. Sounds lovely. Enjoy Abu Dhabi! Alice. I'm going with your theories, they sound cool!! Perhaps I shall discuss them with Dr Harries ;o)
xx

Liz, I know you mentioned a few posts back you are thinking about trying a wig... I have found some HEADBAND wigs on sale, am going to get one for myself.

WWW.WIGTRENDZ.CO.UK

Brand is HENRY MARGU, BAND WIGS. There are 2 wigs that would suit our FFA, the PAGE BAND (this looks exactly like your hair Liz in your photo so it would be very easy for you to use this wig to transition into wearing supplemental hair) and a CLASSIC BAND. both sytles are bobs on a wide hair band, they are suitable for people with hair loss and are not just a fashion statement.

The price that we would pay with the VAT refief is PAGE BAND £65.60, CLASSIC BAND £69.60 - these wigs are very cheap at the moment because they are in a sale. The Henry Margu brand is a good quality brand and these wigs do retail at much higher prices. You just download their VAT relief form on the website and post it to them. I have used them before to purchase the wig I am wearing in my photo and they gave good customer service.

I think the headband wig would be comfortable to wear in summer, on the beach and just nice and casual for popping up the shops.

This is also a cheaper option Liz than buying a full wig to start with.

Good luck.

Hi ladies,
Alice I love your theories although I have to admit to not knowing about any of the stuff you are talking about! It's nice to go to a fantasy land every so often though! I have actually wondered if Queen Elizabeth the 1st had FFA as in later life she appeared (if you believe all the movies you see!) to have an extremely wide forehead - so if that's the case I guess we're all in good company!
Celia it sounds wonderful where you are and very relaxing. It's very hot in Melbourne at the moment for the beginning of Autumn, but quite beautiful, so we're not complaining about the heat too often and I'm sure the much cooler weather is right around the corner! An Indian Summer would be nice though.....
I have been enjoying my beautiful granddaughter over the past couple of weeks and not really thinking about my FFA as my daughter in law has had quite a few set backs since the birth. Mastitis (which is bad enough) and then due to a hospital stay on IV drip she developed a blood clot in her leg which was a really serious situation. I can talk about it now as things are finally improving (after 5 weeks!), and she is at home finally with Chelsea and my son after needing to stay 2 weeks after hospital at her mum's with Chelsea having home/hospital care. Thankfully they live close by so Ryan (my son) could visit each night (he had to work and look after Izzy their dog). We're hoping she is on the mend and I have to say her attitude is wonderful - which makes me feel very grateful, so I'm taking a leaf out of her book and making the best of my FFA situation I've decided.
Quite a few of you have spoken about loved ones and friends with much more serious health issues than FFA and it really does put our problem into perspective - however don't get me wrong, I'd much rather I didn't have FFA and I've had all the feelings everyone has expressed in this discussion over the 2 years that I've had the condition.
I hope you don't mind me 'unburdening' myself, but it's quite a relief to be able to talk about what we thought would be a wonderful experience in becoming grandparents - to what did become a very scary experience. Such is the roller coaster of life! You never know what is around the corner. Thanks for listening ladies.

Hi Debs,
Just saw your post to Liz about headband wigs. Thanks so much for sharing the info - that's brilliant - such a help! I've been looking for exactly that sort of thing and you've made it a lot easier. I'm going to look it up now.

Robyn,
I don't know if Elizabeth I had FFA but some derms in Spain have speculated that the Duchess of Urbino may have had it. See http://apps.elsevier.es/watermark/ctl_servlet?_f=10&pident_arti...
If they did, we may in be good company. But I'd sill rather have hair.
I'm not ready for a wig just yet, but have been buying lots of scarves and hats in case the need arises.

I like it, Alice. It's nice to go into denial every now and then, isn't it and a sunny spot by the pool seems like a great place to do it, Celia. I was much happier during Christmas break while I was walking on the beach. The sunshine and fresh air is good for us.

Alice, I have looked at your thread, very interesting, I saw a woman in her 60s at a local craft fair last year with the exact same hair loss, she was a very elegant lady and wore her hair up in a bun, I was surprise to be honest that she did not wear a wig to cover the hair loss because it was very noticeable, recession about 3 inches all around the hairline. I instantly knew it was FFA, I was not wearing wigs at that time as I had only lost very little hair and I did consider going up to her and asking about the condition but didn't want to appear rude. I know that most derms think FFA is a modern condition but I think it may have been under-reported in the past and maybe not a common as it is now. Thanks v much for the info. XXX

Debs, I've seen lots of women of African descent with hairlines similar to FFA. When I asked my derm about them, she said they were likely "traction alopecia", from pulling the hair back too tightly. I'm certainly not brave enough to wear a bun or ponytail, but the 2 things I've always wanted to avoid were wigs and dentures. Fortunately, my teeth are sound and I haven't lost enough hair [yet] to consider a wig. I like to think I will be able to get away with scarves and hats but that remains to be seen. As itchy as my scalp is, I think a wig would drive me crazy.

Alice I think it is a great idea to use scarves and hats to be comfortable especially if you are experiencing itching. I have some scraves too so I am not always in a wig. Went to the gym earlier, I wear a wide headband that does me very nicely. I don't fancy working out in a wig but some people do manage it I know. If you have a favourite place to get your scarves do let us know, it is nice to have a recommendation. XXX

Debs, thank you so much for sharing the TED talk. Pretty amazing.

IMG_1095.JPGOMG just got the first of my 2 Henry Margu wigs, only ordered a couple of days ago, very good service and the website gives us VAT relief. My page band wig should be here in a couple of days. At least I am having a bit of fun from this condition.IMG_1096.JPG

Jules - Debs had posted this some time ago. I'll repost it here. http://www.youtube.com/watch?v=lrJom48KQA4
It surprises me a bit to hear that you're so tired from the paleo diet. I have found that if I follow it an eat right, I have plenty of energy, but I've also found it to be so restrictive that now I'm just leaning toward it rather than following it strictly. I've been eating some rice and having some wine. I've come to the conclusion that fanatical obsession with these things just isn't realistic for someone like me. Since I started eating gluten-free a couple of months ago I've seen less inflammation - with occasional flare-ups, but I have no illusions that my diet is going to bring this thing down.

Debs - you look really great in the curly wig. I'm sending for a Henri Margu fringe thanks to your reccomendation. Hope it is as successful as your one.

Thanks for re-posting the TED talks link, Susanne. When the speaker was talking about bald women in the movies, I immediately thought of the film "Grey Gardens", in which Drew Barrymore plays a woman w/ alopecia who a relative of Jackie Kennedy and wears turbans.
I don't have a favorite site for scarves, Debs, but have picked up some lovely vintage silk ones at second-hand shops. I've also been buying patterns for hats and headwraps, since I make most of my own clothes. Did I mention that I a bit of a cheapskate?

Debs, you look lovely. I want one! That's just the style I'd go for. It would give the hair that I've always wanted :o)
I am going to see Dr Harries next Friday. I am travelling up from Brighton for the day. I've never been to Manchester before so it's a shame I wont have more time there. Are there any questions that anyone feels it important that I ask, either for myself or for all of us. I'm a bit crap at talking when I'm nervous. I want to get as much out of this appointment as I can. Anything you all think I should ask would be helpfull :o)
xx

Liz, if you check the previous page I posted some info for you a couple of days ago, I saw a page band wig that looks just like your hair in the photo on this site, on sale at the wigtrendz website. I have just got this new wig from them and have also ordered a page band wig too. I know you had mentioned you were looking at wigs a little while ago. I don't have any questions for Dr Harries, I stared on the hydroxchloroquine a few days ago. Take it with breakfast and dinner. No problems with it. Dr Harries is very nice Liz so you don't need to feel anxious talking to him, he is very understanding or our situation.

Rebecca, the excimer laser treatment you referred to sounds very exciting, especially since it doesn't involve drugs w/ negative side effects. See http://archderm.jamanetwork.com/article.aspx?articleid=1105344
I agree that would be a great question for Liz to ask Dr. Harrise.

I don't know if anyone noticed, but one of Dr Harries' papers is referenced in the article, which suggets he may be aware of the research. It's exciting and at the same time frustrating to know something might help our condition but we can't get at it (yet)!

Jules, yes I went back and looked his name is referenced but he may not be aware of the article if the Dr doing the researched was only referencing Dr Harries earlier work.
Liz, can you run this past Dr Harries on Friday please - EXCIMER LASER treatment with Alice's link below.

Hi Debs. Yes I will mention it to Dr Harries on Friday.
Have any of you heard of 'Hair In XS'? They specialise in a mesh hair loss system apparently. I realised last week that thier shop is about a 5 minute walk from my home. I popped in to thier shop on Saturday and thier before and after pictures are very impressive. Anyway I have an appointment on Wednesday to learn more about it :o)
x

Liz, I have not heard of that specific hair system but I have met a lady with FFA wearing a hair system, it was excellent, she goes to a place in London www.greatlookinghairlondon.com mob 07949 207848 I would go to your place and maybe check these guys out too and see their prices. I met this lady in December at a support group meeting run by alopecia UK. I can definately recommend this salons work having seen how it looked on her.

Thanks Pam. I have an all over thinning of my hair. It's a lot different now than it was. I notice it especially before I do anything with it in the morning. It sticks out like there is electricity running through it. Also there is a lot more noticable shorter length hair thats about 3 or 4 inches long and this shorter hair sticks up!
xx

Liz, the static electricity look and shorter hairs sticking out sounds as though your hair may be dry and breaking off. There are products available that are supposed to help this. Perhaps you could ask your stylist to recommend something. I've noticed that my hair is a lot drier than it used to be. Don't know if it's related to the FFA or not.

Hallo I'm new here and I have had LPP for 3 years.I am happy to have found this group.Here I see that some of you have tried the same drugs and creams as me.

Yesterday I posted on another alopecia website did anyone know about excimer lasers... 2 guys have replied that they are aware of several small scale studies and it is being talked about as helping alopecia areata, they don't know if it is going to be offered as a treatment option on the NHS in the UK but it has been shown to be effective. Lets see what Dr Harries has to say about it. Good luck Liz, thinking of you today. xxx

Hope everything went well yesterday Liz, I was thinking of you. He probably won't tell you anything new but a Friendly professional opinion will hopefully keep you positive!x

Hallo :o) What a lovely man Dr Harries is. He was friendly and considerate and listened to all my concerns. I didnt feel at all rushed and I sat talking to him for about 40 minutes. He told me the same things that he has told those of you that have seen him, that they dont know why and who this conditin affects or the eventual progression. We talked about medication etc. He looked at my hair now and compared it to the clinical photographs I had taken back in September. We both agreed that I have lost more hair since then. He also checked my nails which are very pitted.
He wants me to take Doxycycline until I see him again in 3 months time. He wants me to double it to 200mg daily. He injected steroids in one area of my hairline and says if that goes ok he will inject all along the hairline next time, it didn't hurt at all (hopefully to stop the inflamation underneath). He also suggests that I use mens strength of minoxodil (Regaine) because I have thinning over the top (which may not be related to the FFA).
I asked him a few other questions. Swimming is fine. There is no evidence to suggest that diet has any impact on this condition. I mentioned the Excimer laser treatment and he said that there is no evidence that it works. He said that me and my mum both having FFA is very rare.
For any of you in the uk who are thinking of getting an appointment with Dr Harries, I recommend it. He knew about the forum :o)It was so nice to meet with a professional who has a real passion for this condition and who is happy to sit with you for as long as you want to talk.
xx

Hi everyone. So glad your appointment with Dr Harries went well Liz. Good luck with your treatment.
I've not felt at all well for several days. Burning pain in my stomach and abdominal cramps. My husband has had similar symptoms otherwise I would think it was the hydroxychoroquine that was causing the pain. I've noticed that after I take the drug I have stomach pain but that it passes off quite quickly. I always take the tablets just after a meal.I've missed several doses as I haven't felt well enough to eat much.

Hi Debs,thanks for the advice. Sounds like your diet is really healthy and you work out a lot. You must be very fit! I am feeling better today. I went to work on friday which didn't help my recovery. I really should have called in sick but I didn't want to let the team down. By the way, I've just read one of your posts that said you had been advised to use Dermovate for only two weeks. Was that from Dr Harries?
Liz I think you are very brave to have the steroid injections into your scalp. I do hope this works for you. Dr Harries is clearly the expert on this condition so you are in excellent hands.

The steriod injections didnt hurt at all. Dr Harries told me that they can be uncomfortable and I braced myself for pain but they were not painful at all.I would be happy to have them all the way along next time.
x

Jules I am sorry you are feeling low. I am taking hydroxychloroquine but Dr Rajpar has said there is no guarantee it will halt my hair loss. It does seem to have worked for some women. I'm seeing Dr Rajpar agin in three months. Wish I could pack up work as my job is pretty stressful and I'm sure that's not helping. In fact it may well have been the trigger that set this thing off in the first place.
It is worrying that the steroid injections given to Celia and Rebecca have caused ridges and indentations but not actually helped reduce the hair loss.