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.

Pam thanks from me too. I have signed up for the CARF newsletters. i like the practical advice re diet and supplements.

Pam, thanks for the CARF link. Really useful information in their newsletter. Shall definitely be signing up.

Ladies that are taking hydroxychloroquine.... I asked my GP for a prescription and he gave me one with no problems. When I went to a local chemist to get the prescription filled I asked for Plaquenil not a generic version of this drug (because I know some people have tummy upsets with generics) he has Plaquenil in stock but advised me the patent on Plaquenil has now run out and the generic version of hydroxychloroquine sulphate are being stocked in many chemists. Plaquenil is available but you may need to ask you GP to specify on the prescription that you want this otherwise a generic version may well be dispensed. I know some ladies are using generics with no tummy upsets so it is not absolutely necessary to have Plaquenil but some of you may prefer it.

I am off on my hols tomorrow. Taking buffs for the beach and silk scarves for the evening. I am packing one wig just in case, the one I am wearing in this photo. I am so used to wearing wigs now it seems odd to be without them. I will catch up with all your news in a weeks time.

Have a super weekend. xxx

Have a wonderful holiday Debs and thanks for all your information on all sorts of topics regarding FFA ! Sammix

Debs, oranyone else who may know - what is a buff???

Pam, thanks from me also. I have signed up for the CARF too.

Hi Alice, a 'Buff' is a sort of versatile head/hairband you can wear in various different ways. Look up Buffs headbands on the internet. There are a lot of patterns to choose from and their website will suggest ways of wearing them.

Have a great holiday Debs, I'll be going on mine next week. I can't wait to get some sunshine,hopefully! Hope everyone is ok.

Sounds like lots of people going on vacations here. I am leaving this Saturday driving with my family to South Dakota - the Black Hills, Badlands, and Mount Rushmore. It's such a beautiful place and I can't wait to go back there again. Hopefully we'll have good weather there and have a fun & relaxing time. Terrible storms and tornadoes went through Oklahoma yesterday destroying schools and houses; very sad. Hope everyone here has a good week!

Hope all you holidaymakers are having a great time !
I'm at home creating my garden but will get away once all is done. When I saw Dr Harries the last time I came away with only half the hydroxyl.......that I needed for 2 months - went to the GP here and got Plaquenil as suggested by Debs - easy peasy and yet - when I asked for this a few months ago I was told they were not allowed to prescribe it.........have had no inflammation for a few days - I am putting it down to the turmeric I've been taking. Bought some new vits for hair skin and nails and they contain everything I've been taking separately so I will just take that and the turmeric. I'll wait and see what happens. Karen - your holiday sounds wonderful !

Rebecca , I'm so sorry, it is like a nightmare when you first discover your hair just coming out so easily, realizing you have large bald areas to try to hide. I've mostly come to accept my hair for the way it is and become better at concealing it, but it still is not easy. I know it's not easy to do but try not to obsess about it too much, that will just cause more stress and may make it worse. Try to concentrate on the good things in life, family, friends, hobbies you enjoy, soothing music. Just know that you are not alone here, we've all been through this.
And Hello to Mary, glad you are here.

Rebecca, I know in my case some of my hair loss was gradual where I didn't really notice it til it was gone, but at at least one time I had hair pulling out at my temples very easily right during a very stressful time when my husband was in the hospital with heart problems. I was shocked to see it coming out so easily, but figured it was due to the stress of my husband having a near heart attack since it happened within a few days. He is much better now, thankfully. Since then, the rest of my hair loss has been more gradual, just finding lots of hair in the drain and seeing how thin it was getting. And then sometimes I think the FFA stops for a while and calms down. I'm seeing a new Dermatologist who I hope will be able to help me. He's is supposed to be going over my records from another Dr and calling me back soon. I hope he has good news!

Rebecca, I really sympathise with you because a similar thing happened to me. It's horrid, I know, and you feel so helpless. In my case the new patch of hair loss that suddenly appeared behind my ear has stabilised though my hairline at my forehead is still receding. I'm now at the stage where a hairpiece is my only option though I've resisted getting wigs up to now. One nice thing is that my new hairpieces have brought me some unexpected complements and my granddaughter is begging to be allowed to borrow one!

Rebecca - very sorry to hear this. I know it is small consolation - but you are not alone.

I have had the steroid injections and I haven't got a clue as to whether the effect has been good or not.

This is an awful disease - unpredictable, incurable and seems to be arbitrary as to whom it descends upon. I think stress of whatever kind must send the body into some kind of preservation shock. My daughter told me of a friend's mother who lost her eyebrows instantly when her husband died of cancer.

Rebecca - the injections might help but they do leave some indentations - but if you have fringe they can be hidden - and really I wouldn't mind betting that nobody would notice.

It is almost a year since this FFA site began. I keep wondering how long we can have sooooooooooooooo many pages stored. A few of you were here in the very early stages and have thankfully continued to communicate. Recently a few of us ladies in UK got together and I can't emphasise enough how helpful that can be. It is good to communicate over the internet on the forum - but - really brilliant to chat face to face.

Holiday weekend in UK - hope you all enjoy it ! X

Hello Donna - nice to hear from you. My hairpiece is an Ellen Wille piece and is not a full wig. I think it's quite flattering. It has sticky tape strips that attach it to my forehead and three little clips at the back to attach it to my hair. It's a lace front piece so the hairline looks pretty natural (my own hairline has gone back over 2 inches now.) I find it comfortable to wear but we are having a very cool May in Scotland (temp. here today was about 12C) so heat hasn't been a problem so far. I'm not sure what it would be like to wear my hairpiece in hot summer weather. (It seems there are advantages to Scotland's cool climate!) Hope this info is some help. I'd suggest you go to a good store and see what they have to offer in the way of wigs. You might get a pleasant surprise. My hairpiece has really boosted my confidence.

Hi Jules. About my hairpiece. I don't think I could swim in it but I haven't asked about that at the wig studio. And I wouldn't sleep in it because of the clips (and I think it would damage the hair which is synthetic, not human hair). If you look in Alopecia World under 'Wigs, eyebrows, hairpieces, fashion' you'll find a discussion about swimming in wigs. I think you might need to have no hair at all and use a vacuum wig to swim in but maybe there are other options. I think I'll just get a swim cap - possibly with a fringe attached!
I have had FFA for over 8 years but I'm not sure exactly when it started as it was so gradual that it was some time before I noticed it. Oh, by the way, if you Google 'swimming in a wig' you will find more information.

I flew back from the Caribbean this morning. I took a wig with me just in case I felt I wanted to wear one. I wore my buff on the plane and it was super comfy to sleep in and I wore them by the pool and to swim in. They don't make you hot and 'wick' persperation away because of the fibre they are made from. In the evening I did just put a long thin silk scarf round my head - hairband style.

Jules, I am now becoming aware my eyelashes are different. We discussed this at Celia's 2 weeks ago and since then I have become more aware of the change. I am thinking of having semi-permenant makeup on my eyelashes - this is basically just eyeliner tattoo - you can get this done very subtly so it is not thick and Cleopatra style but just creates an illusion of hair being there. The fantastic lady that does my eyebrows also does eyeliner so I will most likely have a go in a few months time.

Sleeping in wigs: if you use wig tape of glue they will stay on whilst you roll around in bed however you will damage the wig fibre so they will wear out quickly but it is possible to wear a wig in bed.

Swimming in wigs: you could swim in a wig, some people keep an old wig that they are finished wearing to wear on holiday to go swimming or wear to the gym. If you wore a wig to swim in if you stuck in on (again glue/tape) it would stay on according to ladies I have seen writing about this on other sites but the wig could be damaged by chlorine/salt water.

Hi Debs. Hope you had a lovely holiday, the Caribbean sounds lovely :o)
xx