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.

Polly... hello and welcome to our group. I am so pleased you have found us so early on in your journey with FFA...XXX

Liz, no I dont have headaches with any of my wigs. I don't wear a wig cap as they tend to be quite tight and I think would definately give me heaches if I wore them. The owner and stylist of my local wig salon in fact advised me to start off wearing wigs without wig caps... she showed me how to pin my own hair up using hair grips (bobby pins), I now have cut my own hair shorter so I don't need to pin it up. I just put my wig directly on my head. I would also try loosening up the 2 straps inside the wig at the back hairline... experiment to see how tight it needs to be to feel secure. Liz, the wig is not pressing on a nerve, however you may have it pulled too far forwards - a common mistake to begin with - put your hand sideways on starting at your eyebrows... the wig should begin 4 fingers up from you eyebrows... if it is placed so your wig hairline starts 4 fingers up from your eyebrows it will not be pressing on anything to give headaches. XXX

Hi Chrisy, The cost for the two hair pieces was $1500, so about $750 each. I won't wear them all the time, so I think they will last for a long time. No, you do not need extra headbands or anything to keep them in place. They have tiny hair combs attached around the "cap" area that fit into your own hair and then snap down. They are very secure when on...even in the windiest conditions. The cap area is only a small band and then there is mesh in the middle with the real hair sown on...so it's not at all hot (which I was wondering about), which surprised me. Once I get them on Thursday, maybe I can take some photos and somehow share them on here. I'll try to figure that out.

Thanks Maddy. I just can't afford a trip to CA. I'll have to find someone closer. Looking forward to seeing pics if you put them on. That's something i don't know how to do.

Hi all,some days are harder than others, aren't they? I was just sitting at my desk at work & scratched an itch over my right ear only to see five hairs fall from the same area. I honestly felt like crying. I started Plaquenil June 22 and keep searching for signs that it's working. My doctor said I should start seeing results after about two months. Can anyone who's had success with Plaquenil share how long it took to see she shedding start to slow down?

Annie I'm having a rough day too. I've been on plaquenil for almost two years. Something was working last fall. Don't know if it was rogaine or plaquenil. This spring and summer i've had more hair loss than ever. I had red blotchy places on the sides and those are gone. Never experienced itching at top hairline (that i can remember) til this summer. I shouldn't have stopped the rogaine in January. I'm done griping. Sorry I'm no help.

Brenda, sometimes we just need need to vent. It's not like we can compare symptoms with the neighbor across the street from us. I'm trying so hard to be hopeful. I honestly feel like a positive attitude helps the healing process. I never had any symptoms except hair loss until after my diagnosis in March--no pain, redness, itching, or red bumps. I thought my receding hairline was just part of the menopause process. Since my diagnosis the scalp around my face has gotten itchy and so painful that I can barely stand to go outside on a windy day. I wonder if it's the alcohol in the Rogaine and Clobetesol causing the discomfort, but I'm scared to death to stop using them. My doctor seems puzzled since my scalp always looks fine

Annie, the first dermatologist i saw last year put me on Clobex first and i developed a red rash where i had applied it. Then she prescribed Luxig and the rash worsened. The first time i visited her she thought i had FFA then she changed her mind. She recommended Free and Clear shampoo and conditioner and womens rogaine once a day. I returned in six weeks and she was sure my hair was coming back. She thought the hair loss had been due to lupus. Then i stopped the rogaine in january and my hair has fallen out horribly. The derm. that i saw this summer said i have FFA. I started the plaquenil for my lupus in Dec. 2011, i think, and at first i thought it was causing my hair to come out as that can be a side affect. Don't know who or what to believe. I just want the itching to stop and my hair to sop falling out. :)

PamW, thanks for the information. I did some research on Plaquenil yesterday, and it sounds like the results are slow and so gradual that you barely notice it. Now that I think about it, my face doesn't itch anymore, and I rarely have the crawly feelings on my scalp these days. At least that's an improvement. I can only use Clobetesol three times a week at most because it makes my scalp unbearably tender. An ice pack helps on those days.

Hi everyone. It's a hot, humid day in Missouri today, and my normally straight hair is a frizzy mess. I was trying to tame the flyaways this morning when I noticed a bunch little short hairs sticking straight out. I started using Rogaine April 5, and the new hairs are about 2 inches long now. For once I'm thankful for a frizzy hair day to help me see that I'm making a little progress up there. I'm reminded that with FFA I need to rejoice in even the smallest blessings.

Carol well done for educating your doctors... I am horrified how in the UK patients with alopecia are not given any advice on support groups or wig info with a diagnosis. We are just told bluntly with are losing our hair and that's it... I have given my GP info on this website and several others but I very much doubt he will pass it on to other GPs in the practice or any patients.

I started wearing wigs when it got to the point that a wig looks better than my own hair... I get compliments on my hair all the time in my wigs, several times a day, it is unbelieveable. A complete stranger walked up to me a few days ago and told me how lovely my hair was! It is hilarious really. I was working with a girl last week that was wearing a wig. I worked with her a couple of years ago, so before I was diagnosed with FFA and had no idea she wore 'hair', now of course as a fellow wig-wearer I can tell because I am tuned into peoples hair whereas in the past I was oblivious. Her wig is very natural looking and nobody else would every know. I would love to know the brand she uses. I would not of course ask her because it is such a sensitive subject for most of us and I don't want to 'out' her so to speak even in private just between the 2 of us.

But the moral of the story is that for those of use that wear wigs - other people really can't tell it isn't our own hair because they are not looking at other people that closely and they just don't have wigs on there radar.

My anti-inflammatory diet (see Dr Weil's website) is going fantastically. I have lost a dress size, an unexpected bonus. My skin looks really fresh. I feel that it is improving my overall health and it is giving me peace of mind that I am trying to help myself. I am going to keep on it. I am also juiciing vegetables at least once a day to improve my nutrition further.

Have a great day everyone. XXXX

April, I am doing the anti-inflammatory diet, check out Dr Weil on the internet for full details. It is not too heavy on protein and is promoting veg and fruit with other foodstuffs in moderation. I don't have any problems on it and you should find the amount of roughage in the veg and fruit helps your digestion.

April, have you also tried the hydroxychloroquine sulphate (plaquenil) that is a common first drug used by derms for FFA and has a 50% success rate.

For the first time in a while I feel a wee bit down. Saw my dermatologist this week and she basically said I should stop taking the hydroxychloroquine (Plaquenil) because it hasn't worked for me. She said there were other immune suppressing drugs but they had potential bad side effects and were not proven to work anyway. I said I didn't want to take anything with a risk of bad side effects.
She said that I could continue with the clobetasol lotion and she didn't need to see me again. She said FFA tended to be self-limiting (I knew that already) but every case was different.
I'd be interested in hearing what other people's dermatologists say about how long you should take the hydroxychloroquine as I only took it for about 5 months. My dermatologist said that if it was going to stop the FFA it would have stopped it in the first few months.
Oh well. I guess that's my last treatment hope gone for just now - until they come up with a new medication.
At least I've got my pretty hairpieces. Think I'll go out tomorrow and buy a nice new pair of shoes to cheer myself up!

Kath, sorry you're feeling down, I think we all feel that way about ourselves sometimes with this condition. It's funny how every doctor seems to have a different strategy with this condition and the drugs we use. I just talked to my new dermatologist after he reviewed my previously done biopsy and he wants me to start Hydroxychloroquine, whereas my other derm didn't want to use it because of side effects he said were bad. My new derm said the side effects were minimal and rare. He said I should try it for 6 months to a year before we'll know if it's working. I've been doing nothing for the past year due to my old doctor giving me no hope, but now my new doctor says it's worth a try. I have lost a lot of hair in the front & sides and it's gotten worse in the last 6 months I think. Getting hard to hide it now but I'm not ready for a wig. I took my first hydroxy pill today and I hope I don't have the stomach problems, but if it does cause loss of appetite, I could live with that.