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.

Kath - thinking about you and hoping you can rally round and get positive again - sent you a message but not sure if you will have got it ! X

Linda - what did your eye check up comprise of ? I just read from a card to the nurse - was that the same for you and all others out there ?

Linda, Yes I'm having my eyes checked and he will do blood work too. I'm 48 and pre-menopausal so pregnancy is not an issue. I'm also on meds for thyroid and blood pressure but he said would be okay to take them together. So after being on it for a year, have you noticed it helping with the hair loss or inflammation? It seems like with most people it's hard to tell if the meds are working since it seems like the hair will fall out anyway, and burn out when it wants to. But maybe if I had been on this earlier then my hair wouldn't look so bad now.

Karen, what was your eye check like ?

Sorry to hear Kath you have been feeling low - we all do at times I think. I have been feeling very depressed recently, as I realise that FFA has become a truly life-changing condition for me. I am an outdoors person who loves walking, cycling, swimming, horse riding, skiing and surfing, and all of these activities are difficult with wig wearing! I hate the look of myself with thinning hair and no eyebrows or lashes, and find it hard to be positive about a future of wigs and hairpieces. I am going to see a guy this week who has been recommended to me who fits hairpieces and wigs. Although I have just bought one, I am still feeling so unsure about the whole thing, and lack the confidence to wear it out and about. I am scared it looks too noticeablely like a wig, and that it feels hot, and may dislodge. I also want advice about how to cope with wearing hats and helmets with wigs if I want to keep up my riding and cycling. The horror of My Hair has begun to dominate my entire life!

Celia, I haven't had it done yet, he told me to schedule a visit with the eye dr within the next month. I can post about it when it's done. Pam - I understand your comments about being less active. I feel like I can't go outside anymore unless I have a hat to wear or a headband to wear to hide my bald spots. I hate the wind blowing my hair around and it's hard to enjoy taking a walk or swimming when I'm constantly worried about my hair. I stopped going to an exercise class a year ago because I didn't want my hair exposed to the whole group. I wear my hair with long bangs in the front but there's still not enough hairspray in the world that will help on a windy day. At least in fall & winter I can wear hats more easily without getting so hot. If I wear a hat in summer I just sweat and my hair underneath is a frizzy mess when I take it off! We did buy a treadmill so I do use that at home. I haven't looked into wigs or hairpieces yet.

Thanks, Celia - you're a honey. Got your message OK.
Well, the sun's come out again here so I'm going to finish a painting then I'm off to the shoe shop.
KarenGinny - I had no problems with hydroxy. but I was advised to always take it with food. Good luck with it and I hope you are one of the 50% it works for.
Kath xx

I was given Clobetasol liq.to apply to scalp & derm merely said put some on & rub it in.I decided to only put along the thinning area sparingly. Next appt,she said there was atrophy of the skin & I can't bring myself to use it more than once in awhile & don't believe it does anything but thin the skin. She also gave me Doxycycline 100mg x 1 per day and even though it's against my better judgement of using this drug, have followed her advise by using it for 3 mths now. How on earth does one really tell if hairloss has slowed down.What measure is there to tell the derm if anything has helped other than we/ourselves. We see the thinned & balding areas & know there is still shedding but as to what degree????

Hallo I have not being here for a long time, but I have but some photos of my hair loss...

Sigga-Excellent advice, wish I had done that but Derms should have come up w/this: taking a photo of one's frontal hair areas before a treatment(which are usually 3-6mths) & one afterwards.

Hi all. Jules I've been looking at the handybands from Seasalt. Do let me know how you get on with it.
Who on this site has amalgam/silver coloured fillings? I was reading something about the mercury in them causing hairloss and maybe causing lichen planus. Both my mum and I have several of these type of fillings.
xx

Liz:I have many, loved/still do, my sweets. I've heard that some people actually do have them removed & refilled w/other kinder material. I wonder if any of the Derms/research has looked at that aspect.

Jules - I do totally sympathise with you. My holiday in Cornwall was badly affected this year by my increasing sensitivity over my hair loss. I was very self conscious in the sea about my balding sides, and windy walks were a nightmare. I wore a hat a lot, and twice it blew into the sea! Also my eyes seemed more sensitive to the salt water and got red and itchy, and my scalp seemed on fire at times, itching. It seems to have settled down more now that I am back.
I do have tooth fillings, not sure what is in them though!

Liz, I also had silver fillings, but they were replaced gradually between ten and fifteen years ago.

Hi Ellen. I'll have to find out about having my fillings replaced. I have 3 which have been in my mouth for about 30 years!
I am allergic to nickel. I have also had bouts of eczema which flare up from time to time and is made worse if I jewelry x.

Maddy, I recall you were taking the same med Doxycycline 100mg only twice a day. Also Clobetasol on scalp twice a day. Do you see any difference. i see my Derm tomorrow. Did you also have those scalp injections ev.8 wks.?Thanks.

I saw my derm today and she encouraged the use of Rogaine 5% but I recall reading that several people had more shedding for awhile upon starting. Is this what most have experienced? Derm said this happens because the hairs that are just sitting there ready to shed get pushed out by the newly grown hairs. I understand no growth can occur on the areas where FFA has demolished.