Simone, if you can find a hair piece that is affordable for you then by all means wear that instead of a full wig, I feel more secure in a wig, that said I have never worn a hair peice so this is just my personal feelings, I would go to a wig shop and try both on, I find that in a full wig I can forget I have it on. This condition means that a full wig isn't necessary to cover up the hair loss but it is whatever you feel most relxed in. Try both and see and weigh up the costs.

When I went to Trendco the hair pieces were far more expensive as they were 'bespoke'. They cost about £700.
Celia I am happy to travel to London :o)
xx

This may sound like a stupid question but here goes: How does one know that FFA has stopped progressing? And for that matter, how does one know if a medication is working? Do the bumps along the hairline ever go away? I can tell if my scalp looks red or feels itchy but can't really tell what my hairline is doing from day to day. So, it's hard to judge what may or may not be helping.

Hi Alice. I dont do it very often because it makes me shudder but every few months I pull on some hair around the hairline (about 30/40 strands). If it falls out without any effort or pain I assume that my condition is still active.
x

Good luck with plaquenil, Rebecca. I'd be interested to know how you get on with it as I have to see my dermatologist next week and if it is now a recognised treatment she might suggest it for me. I'm a terrible coward about taking medication, I'm afraid. I always worry about possible side-effects.

Rebecca, Dr Harries has told me to take 200mg twice a day to begin with, I know there are other ladies taking it twice a day and some just once. Rebecca are you also taking the doxycycline ?? and having steriod injections into scalp?? Liz, you don't know if the meds are making the FFA slow down/stop or if it would have done so anyway if you did nothing. This is one of the many problems with FFA and why it is so hard for derms to treat because getting evidence of meds that works really is tricky.

I've just joined Celia's group. I've also been prescribed Hydroxcloroquine 200mgs but only once a day. Worried that this may not be enough to be effective.

My hairloss have just taken a turn for the worse. I was losing loads, started Doxyclycline in late September for 6 weeks and then stopped. My hairloss slowed down and now has become worse so maybe the Doxycycline helped?! x

Has anyone had contact with the Cicatricial Alopecia Research Foundation and how did they find them? I contacted them regarding setting up a group close to wear I live but they seem very focused on who my doctor is. I've been told that I cant run a group as part of what they do unless a doctor is present which I disagree with x

Hi Liz. I contacted CARF some time ago and I joined them. They send me information by email about when they are having their conferences etc but frankly so far I haven't really found them much use to me as it is all USA based - or seems to be. I didn't know that CARF would want a doctor to be present as part of a group!! That does seem a bit strange to me. I wonder what sort of 'group' they mean?

Hi Caro - I am new to this website as well and live in the US. This is a horrible rare disease to have. I cried for 3 days after I self diagnosed myself compared to 1/2 hour of crying when I found out I needed open heart surgery due to a bacterial infection that blew out my mitral valve. I know - it's crazy - but it gives one an idea of how devestating it is. It's only hair - but somehow it's more than that. It affects our life style as well as our self image (in my opinion) and also makes me wonder how healthy I am. The few people I have told don't quite understand how I feel about this - there is the response that I can always get a wig - which upsets me.
I take plaquenil as well as an antibiotic for the inflammation. I am not sure - but I think it has slowed things down.

Hi all, and welcome Caro. It is a devastating diagnosis and then. . . well. . . a year later, I just feel a bit numb. I have had a range of meds. . . steroids, Finestride, Plaquenil 200 mg once per day and now twice per day. INitially my derm prescribed just once and it didn't seem enough. Coming off of the steroids with just the low dose Plaquenil, I was losing alot of hair this fall. She upped the doseage to 200 mg twice a day and it has slowed things down. I think that Plaquenil is the first go-to defense for the dermatologists and I had been asking about Actos. She did not want to jump to that med without maxing the Plaquenil dosage. I have gotten to where I try not to think about it since it steals my essence. Good luck.

I'm alittle jealous of all the Brit ladies being able to get together. . . anyone in Chicago??

Rebecca, I did ask about the indentation that the steriod injections leave and Dr Harries said they go but it can take several months... is that your experience? or do the dents stay forever? I don't fancy making my scalp look as you have put it 'like a skull'. Liz, I am so sorry your hair loss is bad at the moment, I know you are probably not going to be able to take the hydroxychloroquine but as you say maybe if you restart the doxycycline it was slow it down again. Welcome to the group Caro, we have already been chatting on the alopecia uk website. Glad you have also joined this group. xx

I think tissue atrophy and loss of pigmentation are known side effects of cortisone injections, though not necessarily common. Years ago, I got a cort shot in my elbow for tendonitis. Not long after, I noticed the bone was very prominent and the skin had turned very white. The skin color finally came back but the tissue is still thinner than the other arm. I would imagine that de-pigmentation would not be noticeable on the scalp but tissue atrophy would look like dents. I believe my derm told me that long-term use of Clobetasol can cause the tissue to thin, too.

My indents got better. . . I had injections quite a bit from last November through June. I had a deep one that ran down my forehead. They are all filled in and when I transferred to Dr. Barbosa, she insisted that I stop the Clobetesol as well. the skin at my temples was very thin. I have used Protopic when inflammation pops up. But since taking the Plaquenil, the inflammation at my temples and above my ears has totally disappeared and the most worrisome is that the top of my scalp along the hairline is still showing red around the follicles and is thinning.

I have an indentation which starts at the point where my old hair line was. I've never had injections so maybe for some of us it is the condition itself which causes the indents.
x

Thanks very much ladies for that info, I will treat these injections with caution if I am given them on my next visit.

Hello again everyone and thank you so much Celia for your welcome message and invitation. I would love to come if I can.

Hallo everyone.Hope you are all having a nice day :o)Can I ask about your nails? I read today that alopecia and nail pitting quite often go together, although the article I read refered to alopecia areata. I'd looked up to see what I could find becuase I've had ridges on my nails for years (top to bottom) and in the last 6 months or so they've also been a bit bumpy (I cant thing of a better word) in the other direction. Any one alse have this, or not?
xx

I saw Dr Harries today. Some "good news", or so I thought, was that my hair has already receded 2 cm at the front but because I had a low hairline, it doesn't show too badly. The sides, however, could continue receding, he said. And they've already gone back miles.
He said that the average amount of frontal hairloss was about 4 cm, max 8 cm. He didn't know what % of patients lost the maximum 8 cm. He knew of no correlation between hairloss elswhere on body and how far back head hairloss would go, nor how fast it could progress. It's different for everyone. Regarding Griseofulvin, it wasn't something he would consider prescribing for FFA, but if it worked for someone, he'd be open to using it. I asked about fucidin - he said it probably had no effect on the FFA and the fact that mine seemed to stall after using Fucidin was coincidence.
So, I went armed with a list of questions, but mostly he had to reiterate what we already know - there are no hard and fast rules.
I'm carrying on with Doxy for a further 3 months to give it chance to work.....plus elidel - a weaker steroid cream than dermovate so it doesn't thin the skin. And he thinks that it might have some effect when used alongside antibiotics. I've declined injections for now. Next appt in June.
4 days on paleo diet - no improvement yet!
Liz, I haven't noticed a problem with nails.

Have a good weekend everyone.x

My nails are ok. A few months ago I agreed to participate in a dermatology clinic session at the university medical center and everyone who had a look at me checked my nails. I didn't know why at the time.

My nails are very weak. I keep them very short because they peel and split so badly. I've been taking Biotin supplements and using paint-on nail hardeners, all to no avail.
I've been using Elidel on my eyebrows for months and most of the hair there has grown back. I tried using it along the hairline but haven't noticed any difference there.

Hi Liz, my fingernails are OK. No ridging, though some of my toemails are slightly discoloured and one is thickened but they've been like that for some years. I forgot to mention this to Dr Rajar. I had a look at some images on line which looked a bit like my toenails, though mine are not nearly as bad as some of the photos. I went to my GP to get my prescription for the meds and asked her to look at my toenails. Asked her if it could be Lichen planus? She didn't think so but said she would have clippings tested for ?fungal infection. Alice that's great news that your eyebrows are growing back!

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?