Hi. Hope everyone is having a good weekend.
I've taken myself off both the Doxycycline and Regaine. Both were making me feel ill. Perhaps I have a low tolerance for medication but the Doxycycline was making me feel stressed, giving me ear problems and neverending thrush and the Regaine was making my eyes burn. I'm now dosing myself up on Piriton to try and help. I have started to feel better the past 2 days thankfully.
I'm losing more hair and feeling very sorry for myself. My son said that it looks like a scar where the hair has gone :o(
Has anyone else who sees Dr Harries had thier appointments changed? I've had my June appointment changed 4 times so far. I'm wary of booking train tickets incase it gets changed again.
xx

Hi Liz - I was due to see DR H back in March - 21st - I got a message saying my apt was cancelled. A while later I was given one for the 2nd May - - 6 weeks later - I asked Jean Brock why the appt was changed and she said Dr H was going on holiday. Sorry you seem to have been messed about - to change it 4 times when they must know you are travelling a distance is not good, but we have to do as we are told I guess ! I am not taking the doxy any more either, just a handful of vits and turmeric.........

Hi everyone, thanks for the article Pam, looks interesting. Hope everyone is ok, looking forward to seeing some of you in a couple of weeks. Celia and Liz, when you say you are no longer taking doxy do you mean hydroxychloroquine sulphate or is this a different drug? i'm getting confused!
Is anyone suffering from a sore mouth and tongue, I don't know if its to do with the problem I have with itching salivary gland or its something else.
Liz I hope you are feeling better , I've been thinking of you today, keep your chin up, its hard when your appointments keep changing, but it will be worth it when you do get there. I wonder what he will perscribe you instead.It will be great to talk when we all get together at Celia's.
My sister went to an new salons open day last week, and they had a Halo Elite which uses a laser light to strengthen the follicle so they produce thicker healthier hair for people who have a problem with thinning hair, is this the laser treatment that ther was discussions about a few weeks ago. I might go for a free consultation1!

Hello Debs, Liz, Heidi Jules Caro, Paula hopefully I hope to see soon. I hope the day will be good. Well we shall MAKE it good ! Bring some walking boots/trainers......and we'll get some fresh air - hopefully 3 days later - we will all be cured ! Liz - every time I wash my hair and dry it - the sun is shining through the window (well if it does !) and I can see hair falling. I will ask Dr H if that hair gets replaced or not - but I expect the response will be - not enough evidence to make a judgement. Oh dear. I think it must be a very difficult job for him to see so many ladies with this prob and not to know the answer. But I guess his day must be bespattered with folk with other derm probs.......I have said before - if a really high profile person developed this FFA prob - it would maybe get solved sooner. X

Thanks for the clarification Debs!
Celia its funny you should say that about a high profile person. I was watching E News this weekend ( American show biz program!) and they were talking about a Reba Mcintire, a famous country singer and they showed a picture and I immediately thought she looks like she has FFA, I don't know if she has or not but it did make me sit up and have a second look. I did go on the internet to investigate but there wasn't anything, not that I want the poor women to suffer from it but I did think it would be great if someone famous could front our cause!

Maybe we should all run naked through London. That way we'd be high profile. The newspapers can fight our cause as we sit in jail. 'Free the FFA 57!' xx :o)

Ha ! Ha ! Liz - that sounds a shade too desperate ! Although I must say - desperate is really how I feel some mornings when I wake up and the enormity of this horrible disease is there. How good it would be to wake up and not have this to be The First Thing to think about ! I expect many of you feel the same. Oh dear, this self-pity is NOT the way forward ! Interesting what you said, Heidi, about the singer - I know that in one year from the 23rd or so of June we have 'collected' over 50 women on this site with the problem. Sounds a lot, but I think this FFA is still very rare - just over 50 people in a few countries is not many. There must be a lot our there who suffer with this and are not able to communicate with others in the way we do. The loneliness and fear I personally felt before 'meeting' you ladies was scary to say the least. Well - tomorrow's a new day - hope it's a good one for you all ! x

My hair is getting worse :o( I've now lost this much, and I've only had this 'thing' for 18 months. I'm not feeling depressed about it today, just angry. Tomorrow I may be depressed and then I shall drink tea and knit another headband!
xx

Liz - I am about 18 months down the line also. Suggest you stop covering your hairline with a hairband and instead make a fringe. Just bring your hair down over your forehead. Not sure how long the rest of your hair is, but maybe have it cut shorter ? Fluff it up a bit. Yesterday I persevered with some product from Philip Kingsley - anti dandruff cream - you put it on your hairline and wait 20 mins then shampoo as normal. I have to say that today - I have had no redness on the hairline and haven't used the dermovate/clob cream today. Liz - get a little air to your hairline, don't cover it with a hairband - just let your remaining hair do the trick. I am so sorry - this is just a thought. I do look forward to meeting you. Just try what I suggest, please. x

Hi Celia. I dont wear the hairband much, only when I want to forget about the hairloss. I wear it now several times a week and sometimes in the evening. I have a son with Aspegers who is facinated by my hairloss and not in a good way. A few days back he told me that 'it looks like a scar around your head'. I said to him 'Are you being horrible about my hair?' He looked at me and said, 'No, I'm being horrible about the bit that has no hair'. He also keeps asking if I have cancer. He thinks that losing my hair is a symptom of cancer even though I have tried to explain that it's not...And so, that is why I am wearing the headband more! And, alas, I dont have enough decent hair to make a fringe. The hair on the top of my head is thin and has gone frizzy. I asked the hairdresser and she said there is not enough hair. I may try some Philip Kingsley shampoo. My hair is so dry. I went to the doctors yesterday with itchy sore ears and she mentioned anti inflammitory drops for them or almond oil. I wonder if that would help my head.
xx

Pam - I too have no idea why days are different - could be diet/stress or something we do not know about...... I am using the Philip Kingsley dandruff treatment and it worked the other day - I use Kerastase shampoo and also the Kerastase Bain Satin conditioner - the latter is making a difference to dryness - it actually feels like hair again ! For how long who knows ? Of to run around the gym - escape a bit ! x

I saw a woman at work at couple of days ago that most definately has FFA, I have never met her before and I decided not to approach her in case I caused offence. Her hair loss is about the same as mine (which I think is about the same as Liz) and she was wearing her hair long and up in a pony tail. Looking at her straight on was OK but from the side view the FFA was evident. I saw 2 ladies in the waiting area at the hospital the other week when I saw Dr Harries, both had FFA and were trying to style their hair without using supplemental hair. I can see that it is possible to brush it forwards and wear a fringe to a certain extent but the hair loss notices sideways on more than when you look at yourself in a mirror from the front view. Pam's suggestion of getting a fringe piece would work as would Celia's suggestion of having a fringe cut in from further back if your hair will allow. I would just say having seen these 3 ladies and their hair styles do just check yourselves out from the side view when deciding how you will manage your hairdos because from the side view the recession is more noticeable than from the front.

Hello all - I see Dr Harries in the morning and will ask him the q about DNA testing and what would they be looking to identify. I am going with rather a lack of optimism, I'm afraid, but that's partly my mindset at the moment - I will be very upbeat when I see you all though - I promise ! We are collecting Martyn's 92 year old aunt (she has a fine head of hair !!!) from near Manchester after my appt. and having her to stay for a week - feed her up, cheer her up and take her back happy - she is very lonely. Debs - I think I said a few days ago - truly every time I go to the DIY store B & Q I see at least one person with significant hairloss - even 2 cashiers and I end up nudging Martyn. Perhaps this thing has always been around and you don't notice it until it affects you personally.
Liz , I have worked with youngsters with Aspergers Syndrome in mainstream school and I am sure this must be very hard to deal with at home, cannot help your stress levels at times. I hope your school is helpful. See you soon - any other questions - I will check this website in the morning before I set off. Have a good day - sunshine ! x

Paula - I rather stupidly because of security risk, deleted my inbox - you need to invite me as a friend and then I can give you directions via this internal e mail. Look forward to seeing you.

Hello all, I wanted to share that I went to get a second opinion of my hair loss yesterday to a different dermatologist than my previous one. He was a bit more optimistic which made me feel better. When I was diagnosed in March 2012, my other derm did a biopsy on one section of hair and said it was FFA, and offered no other treatment and I was too much in shock to think of any questions to ask. So after a year of agonizing over it and losing more hair, I saw a new doctor now. He looked at my hair more thoroughly and said he's not entirely convinced I have FFA and may be Alopecia Areata instead, or a combination of both. He said FFA primarily only occured in women of African-American descent which I am not, but I'm not sure I agree with that since I've come to know all of you here. But he is going to look over all my previous dermatology records and then probably do another biopsy. One reason I hadn't gone back to the derm is my health insurance says they don't cover treatment for alopecia and my other appointments in the past got very expensive. But I decided I needed to go back for some answers, whether it's covered or not. A few things he did recommend for hair loss was Rogaine 5% and Biotin 5000 mcg a day. He will get back to me in a few weeks and let me know what to do next, and I feel better about him as a doctor than I did the previous one. I know the parts above my ears and forehead that are very bald probably won't grow back, but if I can save more hair on the sides and back at least it will look better in general. I'm interested in the Buffs that were mentioned, I just wonder how hot it would be, but at least I could wear one as a headband over my bald spots and when the wind blows I won't look so weird. I'm not really a hat person, although I have become one. Celia, good luck at your appointment!

CELIA, I wish you the very best of luck tomorrow with Dr Harries. As I only saw him a few weeks ago I don't have any questions for him. I hope you have a positive experience. XXX

KAREN, these derms do seem to have some odd ideas about FFA only affecting specific ethnic groups, Dr Harries thought that women of african origin did not get FFA... I told him that besides myself I know of 3 black women with it.... and now your derm thinks the opposite... I think that really is indicative of how little the medical profession seems to know about FFA and how little empirical research has been conducted until now. I am glad that you feel happier with this new derm and I hope you are able to find an effective treatment plan with them.

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.