Took the plunge today and got a wig! It is synthetic hair, but looks pretty amazing, and both husband and daughter think it is great! I haven`t worn it in public yet...
Next on my agenda is doing something about my non-existent eyebrows. I thought that maybe a semi-permanent makeup would be better than a full tattoo? Any advice?

Pam - not sure where you live, but I can certainly recommend tattooing. I went to Chertsey, Debs having given me the name of a brilliant person who makes the eyebrows look so real. Nobody here knows about The Problem (apart from family) and there have been no comments. Belinda Hayle does the brows in strokes that makes them look totally convincing as eyebrows. I always us a high factor suncream on them daily to help prevent fading - I had them done in December 2012 and my Xmas present to me may be a 'top up'.
The injections were on one occasion VERY painful and remained so for hours after. I have veins now running vertically down my forehead as a result and a ridge along the hairline as well as a 'trough' vertical down the middle of my forehead. My fringe covers it all (except on windy days !). Sometimes I cannot believe this has happened to me, going from normal to THIS seems unreal some days. We just must hope that there may be hope of restoration one day. Still cannot bear the thought of a wig. Well done though, Pam - quite a few of us have gone that route and really are making the best of it. Good luck when you 'go public' ! XXX

Celia - thank you for such a quick response! Did you have a permanent tattoo on your brows, or semi-permanent? Do you choose a colour?
I will see how I get on with my wig - like you, I haven`t really talked about my hair worries, as have managed to cover it up pretty well, but over the last winter it has gradually got more obvious, and I have become much more self conscious about people noticing it. I have lost the hair around my ears, and it looks very thin and scraggy! I thought about having a topper or hairpiece, but it seems harder to fix when the hairloss is like mine, ie front hairline. Going to the wig shop does make one realise that there are people far worse off though, with life-threatening cancer, and having to go through the terrible treatment that entails.
I just feel so depressed that there is so little really effective treatment for auto immune diseases and alopecia in particular. It does have a profound effect on my enjoyment of life at the moment, and I have got to learn to live with it!
I live in the South West, but can get to the London area easily.

I tell all my friends about my hairloss and that way, in a way, they are going through this with me. People can't be supportive if they don't know what's going on. My friends and family have tried my wig on and it's quite a feature in my home, even when I'm not wearing it!
If somebody doesn't understand about hairloss that's 'thier' problem and not ours...Embrace life and wigs! I have better hair with my wig than I ever did with my own hair :o) xx

Pam - I'm delighted that you feel your new hair is a success. Enjoy! I'm sure you look fabulous.
Liz - I'm with you about telling people and I've found all my friends and family are supportive and interested in my hair pieces. Of course I still wish I didn't have FFA but I refuse to let it dominate my life. I love my new look and the confidence it's giving me and I'm so happy you are feeling positive and upbeat about your new hair. Good on you!

Hi everyone! Pam, congrats on your new wig: ) I have a question for all of you, have any of you tried Nioxin shampoo/conditioner? My nurse who does my xtrac treatments recommended it to me, he said it helps promote a healthy scalp. I looked it up online and it is a bit expensive and contains a lot of chemicals, sulfates, parabens, etc. Things I generally stay away from. Just wondering if anyone has tried it and if it is worth it. It seems the main ingredient in Nioxin is peppermint oil. Would tea tree oil have the same effect? Thanks!!

Jules- thanks for the encouraging words. If the injections aren't helping i'm going to ask my dermatologist if i should stop them. Last year i used womens minoxidil for 4 months and I should have kept it up. I tried Nioxin last year and it caused a rash on my face and scalp. I use Free & Clear shampoo and conditioner. Very mild.

Jules, what Dr Harries said makes sense to me. I think a lot of us have had considerable hairloss on the sides with no visible sign of inflammation and many signs of inflammation on top without much hairloss. I've never understood that. I also don't understand the connection between autoimmune and inflammation. Can one have the former without the latter?

Hello all - I know that you don't log on daily but it would be REALLY helpful if we all knew your location - I'm UK. I hope you all don't mind if each time we all log on - we ask folk to go into their profile and say UK US whatever - for me now there are so many of us - it helps to identify and remember in a way - I hope that's OK. Many of us did that a short while ago but there are many new people now. Thanks so much X

April - that story is sooooooooo inspiring ! Thank you . X

Sammiuk hi April I have used Nioxin shampoo and conditioner and noticed the difference. I have found it tk max! much cheaper than online been using it 6 months now.

Carol, wow what a fun thing to do... very plesed that you are carrying on life as normal and doing your extra work. It is so important that we don't allow FFA to rob us of anything more that our hair. Good for you. XXXXX

Hi everyone. I have been diagnosed with FFA and started losing my eyebrows about a year ago. Until recently my scalp itched horribly though I have not started losing scalp hair yet.About six months ago, I started on Plaquenil and that has helped. BUT HERE'S WHAT I WANT TO TELL YOU: three weeks ago I started taking a teaspoon of cod liver oil 2/x per day and the itching has finally gone away. I don't think it's a coincidence. I took the fish oil for arthritis pain but it has had this other welcome effect. My FFA does seem to be arrested though one never knows. Anyway, I thought some of you might want to try it. All the best! Kathleen

Hi all, Wanted you to know that I received my order of SmartBrow that Christiekd recommended and started using it this week. I haven't quite gotten the hang of it, but I love it. It's not like traditional eyebrow pencils that draw a line, but coats every little hair to make your eyebrows look fuller. Christiekd, you're right, it looks very natural. My only issue with it is that the brunette color runs a little dark. I have medium brown hair with golden brown highlights and have always used a light brown eyebrow pencil. SmartBrow is pricey ($29.95), so I called DermStore's customer service line to let them know that I felt like the brunette color was too dark. The customer service rep couldn't have been nicer. She offered to ship me the blonde color at no charge and I don't need to return the one I have. Is good customer service the greatest, or what??? Anyway, ladies, if you're in between colors like me, you may want to order the lighter shade.

Hi. Hope everyone's well. Carol, working as an extra must be exciting. I have the same problem you do with only a little hair hanging over my ears. The left side is worse than the right. Anxious to learn what you decide on, topper or wig. I'm in southern IL and humidity's bad here too (helps the corn grow} but not as bad as where you live. My face and head sweat so much now that i don't think i could stand a wig. Curious about what brand of cod liver oil you're using Kathleen. I'll try anything. I didn't have itching until this spring. Guess that's why my bangs have fallen out so bad. Had third round of injections tuesday. Seems like the itching is worse after getting them. My daughter showed me an article that said BVO in some beverages can cause auto-immune diseases. I'm a Diet Mountain Dew addict. I'm going to try to quit drinking them. I ordered the WonderBrow (believe it's quite similar to SmartBrow) last year but the blonde was too dark. Sorry for writing a book. Have a great day.

Brenda, it's interesting that the BVO in soda might have a link to autoimmune diseases. I got hooked on Diet Coke when I worked at a golf course ten years ago and free soda was one of the perks of the job. I completely gave up soda three years ago because it didn't fit into my healthy lifestyle, so it isn't contributing to the FFA now.

It's Twinlab Norwegian cod liver oil. I keep it in the fridge and take a teaspoon twice a day with orange juice -- you barely taste it.

Thanks Annie and Kathleen. BVO (brominated vegetable oil) is only in citrus and orange flavored sodas according to websites I've read. It was in some Gatorade drinks but Pepsico has since removed it.

I used to drink diet coke every day but have stopped now. Could that have contributed to my FFA. Also my head sweats profusely and feels like menopausal sweats.

My head and face sweat profusely too. But i also have hot flashes. I went through menopause about twenty years ago due to surgery. I blame the flashes on lupus. The head and face sweats on menopause. Don't know what the causes are. But definitely uncomfortable and embarrassing.

I also get the head sweats really bad! It's always right around my hairline. Sometimes it actually drips. I get hot flashes too, but none of my friends ever get the hairline sweating. It must be connected to FFA. I am taking Turmeric too and have possibly also noticed a bit of a decrease in the hair sweats, but I can't be sure just yet.

that sounds just like me maddy. Sometimes I look as if I have run a marathon .my hair dripping wet. I will have to try taking turmeric to see if it makes a difference

Brenda, I can see that the humidity where you live would make a wig very hot indeed, luckily in the UK our colder climate is a real Godsend if you wear 'hair'. I wear a silk scarf, a long thin shape wrapped round my head basically in the same place that a headband would go and tie it in a double knot in the front and then just tuck the 2 end in. In silk material it looks expensive and a fashion choice. I have several nice silk scarves I have bought to match different dresses/tops. If I use larger earrings than I normally wear and no other jewellery it looks good. The silk scarves cost about £15 in the UK at Accessorize shops, I expect you can get something similar in the US. Good luck with finding a solution. XX

Thanks Debs! My hairstylist cut my hair shorter yesterday because of the hair loss. I think the scarves would work now. I'll give those a try first and maybe try a wig this winter. Carol I'm so glad your husband didn't even notice you had a wig on! I sweat horribly when i try to put makeup on. Doesn't matter what time it is. I wonder if this has anything to do with taking resveratrol. I'm trying to take so many new supplements now.

What is it called Debs

Well done Terry ! I am thinking about this ! X

Sounds an excellent idea Terry :o) x

The consultants I have seen in the UK have told me that Regaine is unlikely to work with the type of hairloss associated with FFA. i have looked at the packet instructions on the Regaine, and it specifically says that it is more likely to work for women with top parting hairloss, not the frontal scarring type. I am concerned that initial use of Regaine can cause the hair to fall out - it should grow again, but maybe in our case it won`t! Then I`d be even worse off!
I have recently started taking turmeric thanks to all your advice, and think it has helped the inflamation a bit, and can`t do any harm.
I do worry slightly about the longterm use of hydroxychloroquine. Does anyone know about any know side effects of long term use? My consultant has said that i just need to get my eyes tested every year, as in a few rare cases it can affect vision, but otherwise just keep taking it for ever!
(Am very nervous about wearing my new wig! It is sitting upstairs, and I am just looking at it, trying it on at home, but not daring to go out in it!!! Help. I can`t face the comments I might get from friends and family when I firt venture out in it.)

Pam regaine has really helped regardless of the instruction I have said before it has increased the fullness of my hair I only apply round the front but Dr Harries uk said any left do the middle hairline! where I have no hair loss, I wish I'd used it earlier I bought it once and returned it after reading the instructions, but after two doctors told me to try it I'm so glad I did. My fringe is so much fuller and I intend to continue, best wishes Sammi

Debs, when you started wearing a wig did you get a headache? I get a headache after an hour or so which goes within a minute of taking the wig off, so I think the wig might be pressing on a nerve. Do you wear a wig cap underneath?
xx

Pam - about wearing your wig - I would agree with Debs about taking it gradually. You could try just pottering in the garden for an hour in your wig and then maybe a take a trip to the shops somewhere you don't usually meet people you know.
But honestly if you do meet anyone they're most likely just to think you've had your hair restyled and tell you it looks nice.
I went to a big family reunion at the weekend (wearing my hair piece) and several cousins I hadn't seen for years said I was 'looking good'. I felt a lot better about photos knowing I didn't have to wear a hat or a hairband as I've had to do in the last year or so.
People are not all that observant, I've found. It's just that you are very conscious at first that you're wearing a wig but you do get used to it and it's a great confidence- booster.

Thank you for your very helpful ideas about starting to wear my wig. I am going to go out in it very soon! It is s synthetic one which I got from Trendco in London, and it has a wig cap which you pull over your natural hair, and then the wig just pulls on over that (so I hope it stays on!). I am interested too inhearing that Kath has got a hairpiece. How does that fix on? I would like to get one, but it seems a bit tricky with the type of frontal hairloss that I have got.
Thank you for your support, it means a lot to me when I am so devastated by this condition at the moment, as it seems to be getting worse. I think that when it was first diagnosed I still looked OK and was somewhat in denial of what could happen, and I didnt want the bother of using Regaine every day with only a slight chance it might help.

Hi all, just catching up on the posts from the last few days. I agree that the Rogaine research regarding FFA is a good idea. It is true that hair can't be regrown in the scarred areas, but perhaps the scarring won't occur as fast if the Rogaine keeps more hairs poking through. I also agree that everyone diagnosed with FFA should start using Rogaine immediately. I honestly only hoped to thicken up my existing hair and was very surprised to see the wispy hairs around my face were growing back. It seems like we're all playing a waiting game with the plaquenil, but I noticed new hairs growing within 2 weeks of starting Rogaine. At least it helped me to feel hopeful.

Rogaine does work. I used it for six months last year until my new hairstylist advised me to stop using it in January. By May all the hair that had grown was gone. I wish i hadn't stopped. I'm not regrowing the hair in those places now. I was using the womens 2% then. Now i'm using 5%.

Hi everyone, This is Sandy from California in the US. I have been reading all of your comments about Rogaine and just started using it last night. I will apply it twice a day and will let you all know if I see any difference in a few weeks. I would love to participate in any research that takes place. Thank you all for your posts. I am not sure what I would do without all of you.

P.S. I also just got two top pieces made. I went for the fitting yesterday, and I have to say they looked pretty good and very hard to tell they are not my real hair. I was pleasantly surprised. She has to add a few final touches to them and I pick them up this Thursday. Should be interesting.

Hi, This is Sandy from California again. Forgot to say one thing. I have been using Latisse (bimatoprost ophthalmic solution) on my eyelashes and eyebrows ever since they starting looking sparse and so far, it has worked great. I still have decent eyebrow and my eyelashes are long! Anyway, it worked for me.

Jules, I use the generic 5% Rogaine foam. I just squeeze out the specified amount on the ledge of my sink, dip my fingers in, & apply it between the rows of hair all over my scalp & around the sides of my face every morning. My doctor said the foam only needs to be applied once a day after the first 6 weeks.

Maddy where did you have the top pieces made? And do they cover the sides of your face? Thats where my hair loss is most apparent right now.

Hi Brenda, I had them made by a lady in Costa Mesa, CA, who worked for 25 years at a wig/hairpiece salon in Newport Beach, CA. She was recommended to me by a close friend who went through chemo and had several pieces made by her. The hairpieces are made of real hair. She finds your exact color and texture and then makes the headpieces. It "snaps" on to the top of your head, so, yes, the sides are also covered. If you want actual hair right next to your ears (like a strip), she can add them. I did not do that. These headpieces add more hair to the sides and front and then taper off in the back. It all blends in with your own hair. Anyway, if you would like her information, just let me know and I can email it to you.