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Comment by Caro UK on April 7, 2013 at 7:31am

Pam I'll change my profile photo once I've had my eyebrows done, and be sure to be wearing the wig as well! There is a new me on the way! I tell myself to think possitively. My hair is progressively getting thinner and hairline still receeding but when I put on my wig, I see the old me looking back - well not so old, in fact I look years younger so that has to be good!
I've been looking at Patti's Pearls site - great advice on there, especially about how to make sure a wig stays secure using double sided tape. Thanks Debs.
Michelle, So sorry about your hair loss. In answer to your question I have no follicles visible in the areas where my hair has been lost. They have scarred over. I have about an inch of completely smooth white skin where my hairline originally was. The LLP is still very much active and my hair follicles are inflammed at the hairline and about an inch back from it at the front of my head. I'm taking Planquenil but realistically I don't expect to see any improvement in my condition for many months and maybe not at all. I've been prescribed Dermovate scalp lotion to use for the inflammation. I have never had any scalp irritation or burning like some other people have described.
Liz, personally I would advise against perming because of the chemicals used in the process but hair colouring is fine as long as ammonia is not used. My derm told me I could carry on having my hair coloured.
Enjoy the rest of the weekend everyone - the sun is out here in the UK for a change!

Comment by Kath UK on April 6, 2013 at 5:39pm

Debs, thanks for the 'wig support' website info. That was a great help and I'll look that site up now. Getting my first wig next week (if it is ready) so I appreciate any hints and tips.
Caro, thanks for your info. too. Like you, I'm getting a synthetic wig (I was told that I had a limited choice on the NHS - which is fair enough. I'm happy that I'm being given a free wig!). I don't know how things work in your NHS area but it seems I can't use my wig allocation as part of the payment for a more expensive wig. The one I've chosen seems OK and I'm going to give it a try and see how it looks and feels to wear. If I'm not happy with it then I will pay for a more expensive one myself.

Comment by Liz on April 6, 2013 at 3:36pm

Hi. Does anyone know if perming or dyeing hair makes any difference to the hair loss? I ask becuse I was thinking that I might just do something a bit funky with the hair I have whilst I still can so I think I might perm it and dye bits of it. I have no irritation which is good.
Celia, thanks for you email. How do i access it on this site so that I can reply?
xx

Comment by Michjo57 on April 6, 2013 at 11:07am

I have been going to the University of Colorado for my FFA. First they put me on Minocycline and Griseofulvin for six weeks. The only symptoms I had were hair shedding, no inflammation, no itching, no burning. The only thing is Griseofulvin is hard on the liver. I decided I did not want to take it and have the chance my liver gets damaged. All my problems started after prescription drugs anyway. Last visit to the doc they started me on Spironolactone and Avodart (?) like Propecia. He said a recent study at Duke University used this regimen with good results. My question to all of you is can you see your hair follicles in the hair loss area? I can't see how taking these meds can regrow hair if there are no follicles, which I don't have. I hate taking prescription meds, I have had 6 different diagnoses since this all started, so I don't know who to believe any more. I will let you know if I start the new meds and if they work. I feel great and I hate to have any side effects. Do you all have scalp symptoms like itching and burning? I did for about three months, then I took doxycycline for about 3 months and it all went away.

Comment by Michjo57 on April 6, 2013 at 10:59am

Comment by PamW San Diego, CA, USA on April 6, 2013 at 10:09am

I visited Patti in her shop and she is very remarkable, and so calming. Caro send us a picture of you in your wig!

Comment by Caro UK on April 6, 2013 at 8:17am

That's really useful info Debs. Thanks! Will check out both sites.
Kath, good luck with your new wig. Mine is a lace front and synthetic so it's lighter than human hair. Even so, before it was cut it was too thick and felt heavy on my head. Probably because my own hair is so fine and thin it felt strange, like wearing a hat. Since it's been properly cut it feels a lot lighter and more comfortable. Re the chance of it blowing off in the wind (!) the stylist said I could have a clip sewn into the lining near the base to clip to my own hair at the back which would help me feel more secure when wearing it. She showed me what the clip looked like and where it would be attached. My hair has not been affected at the back of my head. Anyway, for now I've decided to try wearing it without having the clip and see how I get on. I went for synthetic hair because the colour will not fade when washed. It is a pretty good match for my own hairt, which is coloured anyway. Mine wig also be heat styled on a low heat, though I haven't tried that yet.
Really exited about having my eyebrows done (by Noveau Contour). Have to do a patch test first to make sure I have no reaction to the dyes used. I'm going to go for the hairstroke brows as I want a natural look and I have very fair skin so I don't want anything too dark which will not suit me.

Comment by Debs on April 6, 2013 at 6:20am

www.wigsupport.com

I use this website to get info on my wig wearing. A support group of fab ladies that know everything there is to know re wigs. They are great fun and very very kind.

Also PATTI'S PEARLS is a lady that sells wigs and has posted several great videos on her online shop showing how to wash, put on and style a wig. She is a cancer survivor and really inspirational.

And, NO it won't blow off in the wind.

Enjoy your new hairdo Caro.

Comment by Chrisy, MA USA on April 5, 2013 at 11:54pm

Hi everyone! I'm reading a lot about this disease and still have questions. Why the eyebrow hair fall and come back again but the scalp hair once it falls the follicle dies and never comes back again. I find it weird. Also is there a possibility of hair transplant once the inflammation goes away?? Lastly If the plaquenil work for you why would you stop it? I would be afraid to stop taking it in case the shredding start again and then I have to wait for couple of months before kicks in again. One more... how often can you do the injections?? So confused.....

Comment by Kath UK on April 5, 2013 at 6:40pm

Pam, thank you very much for all your information. My dermatologist says she will prescribe plaquenil for me when I next see her so I am glad to hear as much as possible about other people's experience of taking this medication. I intend to ask my dermatologist how many people she has prescribed plaquenil for FFA and what the success rate has been. Good luck with your treatment!
Caro, it was good to hear about your first experience as a wig wearer. I'm getting my first wig next week and I feel a bit apprehensive. I was worried about the possibility of it blowing off on a windy day but you said yours stayed on ok. It does feel like finally accepting that I need to wear a wig is a big step but what you experienced seems reassuring. Thanks for sharing. I bet you felt nervous stepping out to the shops wearing one for the first time. I'm sure nobody noticed and you looked great, though. Did you wear a full wig or a hair piece? How comfortable was it?

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