Debs - you are right I think - how can something like this affect only certain ethnic groups ? We are all made of skin and bone and - OK - if they believe this to be true (which I think is nonsensical) why then do they not do research to prove/disprove that theory ? I will ask tomorrow what we as a tiny group of ladies might do to advance the research. That questionnaire some of us completed.......I wonder what will be made of it ? I am most interested in what meds have been shown to work and on the profiles of people who have been treated successfully with meds. As far as I am aware - the treatments are hit or miss and it's difficult to determine whether any noticeable improvement is due to meds or whether any such improvements would have happened anyway due to lifestyle changes etc. Oh well off for an early night - early start tomorrow. x

Hi from Judy in San Diego. Today Pam and I met - I must tell that Pam is really a beautiful woman, both inside and out. It was
such a pleasure to meet and so interesting to compare notes. We just could not figure out why she has the itching and inflamation which I do not have currently. Possibly it is just I am in remission for awhile. Incidently, her eyebrows are fabulous - too bad we can't all go to her tatoo lady. There was no doubt that we both have FFA. Lacy, we would love to meet up with you so next time why don't you arrange a time?

Good morning all. Got to Salford yesterday in 3 hours exactly. Had the injections again and they were not so painful, thankfully. Dr Harries sees women with different degrees of FFA. The difficulty with treating this condition is, in part that some meds work for some people and it seems to be as we know so unpredictable. With regard to DNA testing Dr Harries said that was really within the remit of those medics who specialize in that procedure. I have hydroxychloroquine but not very happy about taking meds anyway. I was expecting 2 months supply, 2 tabs per day 200mg each tab. However when I got home I saw that I only have 60 tabs. Have an appt. in 2 months time. Have to go back up next Tuesday so I will try to get the other 60 tabs..............My hairloss was measured as to the forehead loss and it was not significant since last November. One and a half cm seemingly although it seems more to me !
Has anyone on hydroxy.... felt that the condition has stabilised since starting the medication ?
Paula can you e mail me on this site so I can give you directions please ? As I said I cancelled the wrong bits on my profile last week so other people whom I have e mailed before are also not accessible at the moment.
So glad your meeting up went well to all of you across the water - I bet it was lovely to begin to get to know each other.
I'm looking forward to our get together here on the 15th !

About 5 years ago I had a bad reaction to some cream. The skin on my face burnt and it took several weeks to recover. I looked up the ingrediants online and saw that that one had been banned by other cosmetic companies. The company I bought the creme from used a lot of this in many of there cosmetics. It's a well known company and me and my mum (both who have FFA)used thier products for years. I'm going to try and remember what the ingrediant is and look it up again.

Hi Celia, so glad you had a productive visit up to Salford and that you have the hydroxychloroquine now. I have been taking it for about 8 weeks so it is still too early to now if it will work for me. Thank goodness the injections did not hurt as much this time round. XXX

Debs - thank you for that ! You are sooooooooooooooooo right ! You are inspirational and we all need that approach. X

Hi everyone- Liz i love your idea of a naked run, can you imagine all of us maturing ladies running through London, at least we wouldn't be worrying about what our hair looked like!!! From your photo you posted, your hair lose is slightly different to mine, I think mine goes back further on the temples but is perhaps less at the front with the 'dolls hair look'. Mine is also completly smooth on the temples with no whispy hairs. You were also saying about frizzy dry hair, mine has also gone very dry, but I use hair straighteners which when used properly (GHD's are the best) really help. I also wear my hair in a similar style to yours, so when we meet up at Celia's shall I bring them to let you have a go. You also mentioned itchy sore ears, I have been been to the doctors this week with a reacurring itchy salivary glands, sore mouth and tongue ,sore spots in my nose and the last straw was when I woke up on Thursday and my left eye had puffed up, it wasn't sore or itchy it was just my eye lid had swollen up! He took more bloods and said there was a type of autoammune disease which can effect the salivary glands, great, something else to look forward too!!!!
Celia glad you had a good visit with Dr Harries, I've been on hyrodroxychloroquine for over a year now with no side effects and it has slowed my hair loss, but it hasn't stopped it completly. I'm really looking forward to seeing you all in a few weeks, it was lovely to hear about Pam and Judy meeting up, its surprising how having someone to talk to can work even more than any medication.
Debs- I did giggle when I read your post to Chrisy, my first thoughts were that's a bit harsh, then I realised what you had done! Thanks for sharing the story of the young girl, I think thats why FFA, at the moment, isn't taking over my life because it could be so much worse, I'm glad its me and not my daughter who is suffering, because I think I would find that harder to deal with. It pulls on your heart strings thinking of all the young people suffering with any type of alopicia, it does put our problems into perspective.
Well I'm off to put my wellies on and tackle my garden,hope you all have a lovely Bank Holiday! X

It does help to talk to other people with health issues worse than FFA - keeps it all in perspective. It also helps to have a supportive spouse or significant other. My husband doesn't like all the meds and steroids that I'm taking for this. His thought is, as long as you have your health you have everything, which is true. But we still need to figure out what is causing this!

On another note - has anyone used the both clobetasol foam and shampoo? Any preference? I was using the foam, but getting frustrated with it. It seemed hard to get to my scalp, just melted on my fingers or stuck to the hair. The foam I just dabbed on the pink areas at night as needed. Now I'm trying the shampoo. Tried the shampoo for first time this morning. This is more time consuming. I parted my hair and went down the entire line, where some was pink and some not on the top of my scalp where I have had more itchiness. Is that how to use it? When you read the information sheet that comes with the shampoo, it sounds scarier than the foam! Do you apply either one in the dented areas from injections? Also I started using Elidel cream on my no hair eyebrow area, and I think she wanted me to apply it along my hairline. Anyone had luck with that cream? Both these meds sound like they are for short term use - but how short term? These meds can be expensive if your insurance company doesn't cover them. Wondering is there a place you can donate any of these meds when you find out they don't work for you after only a couple uses. It would be nice to help someone else out.

I have good luck with Elidel cream on my brows, to the extent that they are almost fully grown back. I haven't had muc luck using it alongbthe hairline yet but am still hopeful something may sprout.

Alice - Thanks. I knew someone on this site had used it but couldn't remember who. I looked back at some posts and saw that you started out using twice a day. My Dr has me using it every evening. How long have you been on it? There is a warning on it that says there may be a link to cancer with long term use. The tube I have should last a couple life times you use so little.

PJ, I think I started out using Elidel on my brows twice a day but found that it was hard to get my brow makeup to look good. I've been using just at night for quite some time. It does go a very long way. My derm has been giving me samples and one of the small tubes lasts over a month, so I've never had to buy any. Since we are using it on such a small area, it's hard to imagine there would be much risk. I think people using it for eczema must use it over much larger areas.

Hi. I've had a good 'hair day' today :o) A friend recommended a local hairdresser who specialises in hair conditions such as alopecia and scalp problems. I went to her for a haircut and she is really lovely. She sees each client on thier own when she cuts there hair so that they feel comfortable chatting to her. She has had alopecia herself so has an understanding of the psychological impact that this condition has. She uses natural products. She didnt try to sell me anything but gave advise when I asked her.She knows of people who have had tattooing on scaring alopecia on the temples. She said because of the difficulty in knowing how much hair we will lose that might not be something we can consider but it was good to know about it. I asked about vitamins and she said that 2 ladies she knows take Viviscal multivitamins. She said that about 4 months later she could see a change to the hair coming through (The ladies had a different form of alopecia so the change was to the hair they had left and doesnt make new hair grow). She also recommended Floradix which another friend had also recommended a few weeks back so I already have some. Anyway she is going to try and find out more about FFA. She recommended a haircut which I had and I feel better :o) I may even go without the hairband all the time xx

Hi All! I am new to the group, but not new to FFA. I was diagnosed 2 years ago although I suspect I have been losing my hair for at least 5 years. It started with my eyebrows thinning first and then my noticing hair loss around my face. I was diagnosed with Alopecia, 3-4 years ago, but my doctor didn't say what kind or give me any information. So I just went on with my life because she acted like it was no big deal and thought my hair would grow back when I wasn't stressed out any longer (from a family tragedy). Finally, I went to a derm when I was still losing hair two years later who did a biopsy and found FFA. I have been using with Plaquenil, Clobetesol, tryimciclone on my eyebrows (topical steroid), doxycycline and Rogaine (which I use on my hairline as well as my eyebrows). My eyebrows have grown back to almost normal. I do dye them darker because they grew back blonde and I do enhance them with makeup. I have also had steroid shots a few times to my scalp and eyebrows when I have had flareups. When I first started treatment, I responded great and didn't have any more hair loss for one and half years - also, I did have some regrowth in my eyebrows. Then another family tragedy occurred that caused me to flare up again. That was last year. I have had more trouble responding to the meds this time around, but I think it is pretty much under control right now. My derm (who I love) did add topical protopic to my other meds recently, so we will see how that goes. I use that on the days that I don't use clobetesol.

Anyway, I wanted to respond to Liz about finding a good hairstylist. Mine is the best. I was her first patient with FFA, but she has been my stylist for 20 years so I told her right away when I was diagnosed. Now she has another client with FFA and has done a lot of research on the topic. She does my highlights really early on Saturday mornings when the salon is empty of other stylists. She gives me great haircuts, and we are able to hide a lot of my hairline issues. However, I do wear a lot of baseball caps and other hats in the summer, especially after swimming or to work out or play tennis. To me, my hairline is much for noticeable at these times. Luckily, though, I work in a health club, so I am always in athletic gear anyway.

I wanted you all to know that I am very inspired by each of you and your stories. I was feeling pretty alone with this disease as it is so rare and women who have it don't talk about it freely (understandably). Thank you all for being here and willing to share.

LIz, your hairdresser has done a fab job, your bob looks lovely and your hair really falls nicely. You can't tell you have hair loss.

Christiekd, welcome to the group, it is very uplifting to read that you have had success with these meds and that your FFA has responded to treatments. Great stuff. XX

Liz - you look amazing ! What a good cut ! I am looking forward to meeting you all so much. christiekd - nice to have you onboard. Hopefully docs will begin to collect and use information to help people like us. Trouble is - it is rare and we are all very unfortunate to have this. Keep communicating - was is easy to find us ? We have been around for almost one year now on this site. X

I meant was it easy to find us - not is....another typo !

Wow Liz - you look great!! I would never have guessed you had FFA. Enjoy your new style. Thanks for sharing your photo.

Christiekd thanks for sharing your info. Good to hear when someone has good results with the meds. Our hairdressers/stylist do play a very important role in all this.

I have just seen a lady on the news who looks like she has FFA. I googled an image of her and it looks like she has a receding hairline and temples. Her name is Kathryn Smerling and she is a therapist. Have a look and if a few of us feel this might be the case I think I will write to her. She must be well known in her field of work and that may be helpful in our quest for my knowledge/research of this condition. Anyway, have a look at her image and let me know what you think.
xx

Pam, I have also debated trying Rogaine, but am not quite ready to take the plunge, maonly because you have to keep using it. My local derm thinks the hairloss at the sides may not be FFA, due to the lack of obvious inflammation but it looks to me like all of us have the same problem - bumps on top but more hairloss at the sides. I have an appt at Baptist Hosp in W-S, NC in Feb, so plan to wait for a 2nd opinion there. I stopped coloring my hair when my scalp was very irritated and it's gotten thin, dry and frizzy. I've tried thickening shampoos and conditioners but can't tell that they do much.

Celia when I come to your house on Wednesday, I have to change at Reading, do you know which platform I need to be on to catch the train to Burnham? I will find it if you don't know, but it might help to point me in the right direction! Looking forward to it!
Liz your hair looks great, and I did look up that lady and she looks very similar to that country singer I was talking about. I don't know if they have FFA or just very high hair line.

LIz, I have looked at 3 photos of this lady and I agree with you that it does very much look like FFA.

Sorry I forgot to say hi Christie and welcome to our select group! From your photo you wouldn't know you had a problem with your hair, it looks great.

Heidi - I have never done that journey - but - just ask directly when you arrive in Reading. Please call me to let me know when you will arrive in Burnham. x

Just got a bit confused I think this website has had a make over! The pages are now back to front which does make it easier to follow, but a bit confusing when you first  go to the web site!

Celia the train time table says I will be arriving at Burnham at 11.39am, hope thats ok. I have to be back at the station for 3.45pm so I only have a few hours, but it will still be great to meet everyone. See you wednesday!

Hi Celia I have tried to email you on the address you gave me but it keeps failing perhaps you could email me on heidishort@ymail.com speak to you soon!

Hello all.  Something has happened on this site - it starts off with posts from last year.......I have gone to page 98 to get here.  I do hope you ladies are able to come still on Wednesday.   I am expecting 6 of you all being well.  My e mail is celiareeve@hotmail.com if you need any directions you don't already have.  Hope all's well. Look forward to seeing you.  We will let the rest of you who cannot join us know how we get on and if we are 'ahead of the game' and able to make a plan to get some serious co-ordinated help and info.................

x

Hi ladies,
Just updating you on my visit to my specialist. She feels my condition hasn't moved greatly in the last 6 months and isn't currently active as she couldn't see any signs of inflammation around the hair folicles (not sure if that will remain or not), and she has reduced the Plaquenil to 1 tablet per day. I don't need to see her again for 12 mths (unless my condition changes). I have been 2 yrs on Plaquenil now and she says it can take up to 2 yrs to see positive results. She also said the latest information from forums she has attended where eye specialists have spoken about the use of Plaquenil is that eye tests need only occur once every 5 yrs - Plaquenil has been used for many many years for arthritis patients with very little reports of side effects. I learned at this visit that my specialist has androgenetic alopecia herself and she told me how when she was diagnosed she decided that she wouldn't allow the alopecia to take over her life and tries to find ways to manage it the best she can. Knowing that makes me feel glad that I found her to help me as it makes it more credible to be getting treatment from someone who has a very good understanding of my situation.
I continue to look for new haircuts and as many before have said 'hate windy days!' I have tried Rogaine (for men - one application a day only) and found that although the hair did thicken up it was fuzzy and looked a bit strange - it also has to be used constantly to keep the growth happening. I might use it again though if my condition worsens.
Hope the information is helpful.

Hi Robyn. Thank you for your latest news. It's good to hear how others are getting on with their treatments. I hope you continue to make progress and the inflammation stays away.
My dermatologist didn't say anything about plaquenil taking 2 years to have an effect - in fact she couldn't say how long I would have to take it but she did say that over 50% of her patients have success with plaquenil. And she advised more frequent eye check-ups than once every five years - but there seems to be a lot of different opinions among dermatologists.
Anyway best of luck with your treatment. I think your specialist has a point when she said that she had decided not to let Alopecia take over her life. I'm working on that attitude too!

Robyn, thanks for keeping us all informed. Very good news that your FFA has calmed down and also very reassuring about the long term use of this drug. XX

Thanks Robyn for your good news. I think it is a good ideas as well to not let FFA take over our lives. Furthermore, I think trying not to stress too much over it (and other things) is important too. I am a very type A personality so it is hard for me sometimes to let the little things go. But I find that if I can roll with the punches, I don't get the burny, itchy feelings on my scalp so much. Plus, I try to remember that other people have medical conditions a lot worse than this. So I try to do a lot of positive thinking along the way. It can't hurt at least.

Celia, thanks a million for your hospitality and a great get together today. It was lovely to meet up with you again and have the chance to meet some of the other ladies from the UK.

It was lovely to see you all. We shall get through this little problem by being positive - sorry I wasn't soooooooo positive all day. You all looked great - we shall do this again in the Autumn - and I would love it if you were all able to come here again - Heidi - I think yours was the longest journey - or - the most time consuming - but thank you all for making a huge effort to get together. Liz - sorry not to see you today but we hope to meet up soon ! Jules - need the cake recipe please ! Martyn loves it........ In order to use the e mail here you need to invite me as a friend. Otherwise I think most of you have my Hotmail. xx

Thankyou Celia for making it such a lovely day. I've just got back from a meal with the family to celebrate Jamie's birthday. I had a lovely time and it was so nice to meet you all. I've shown my family the pictures of us today and they all agree there is no way that any one looking at us would think we had a problem with our hair! Thankyou again Celia you are a special lady.

Pam, Thank you for posting the link to the CARF newsletter. It contains some really good information about controlling inflammation. I was pleased to see that some of the products (tea tree oil), supplements (turmeric & ginger), and foods (olive oil, green tea) that I've found helpful were mentioned. There's also some good stuff in there about cosmetic options. Thanks for sharing.