Dee, I sometimes come up to Edinburgh, Glasgow and Aberdeen... If you are in/near any of those cities we can meet up for a coffee and chat. xx

Debs,Carol- I went out to look at synthetic wigs & the store really liked and promoted the Jon Reneau synthetic. I tried to find more info on wig support but came up empty on what I was looking for and that is the way the wig is made. she mentioned something about hand .... and what would you suggest for the construction of the wig, please & thanks?

Polly, There is a product available here that we can purchase from 'Sallys', called 'Toppik' which are fibers that you sprinkle over the roots and comes in a few colors.Then a little hairspray to secure it in place. There is another brand called 'Illusion' which is the same type of product.The 2 websites are:
www.toppik.com
www.illusionhairfibers.com

Rita a name brand wig like Jon Renau is good quality. Hand-tied, monofilament, lace-front, fully wefted are expressions you will see... I could explain the meaning on here but it will be easier for you to just look at www.voguewigs.com and www.wigs.com websites are they will have full explanations on there with diagrams. My personal preference is synthetic hair (because it is light density and you don't need to style it), lace front (because it means I don't have to hide my front hairline because it looks like hair is growing out of my scalp). A monofilament top also looks very natural but is not absolutely necessary.

I suggest you go back to the store. Look for a style that you like and that you feel comfortable looking back at you in the mirror. If you find a style that you can 'recognise yourself in' if that makes any sense then consider getting that one. If a wig looks like you that is more important than the 'construction' which as I say will be of a good quality with any type of name brand wig.

Has anyone here tried spearmint tea? I've been doing ome reaerch and it seems to have antiandrognic properties, similar to Avodart and spironolactone. I grew new hair on the top of my head while on the spiro, but had to stop it because my BP was too low. I've been offered Avo, but was afraid to take it. I'm thinking spearmint tea might be worth a shot. It's also supposed to help face breakouts, which I've had problems with recently. Any thoughts?

Debs, Thanks again- the wig site www.wigs.com is very helpful in describing the different aspects of buying a wig. You're quite correct though in that one has to feel that in the end,you look like you. I remember the wigs of the 80's and how we'd buy these fake looking masses/ plop them on our heads and think nothing of it when wearing to an evening event or wedding. The pictures are really quite funny.

Hello All - looking forward to seeing you on the 9th - hopefully...... Julie, Sammi, Paula, Polly, Caroline, Debs, Pam so far - please leave a message on my profile if you need directions.
Sammi, Terry - Sammi .......I will send you directions this evening for both train and car. Perhaps you could all confirm next Monday, please - that would be good. Thanks, Celia X

Thanks Celia Sammi x

I meant to say that if I have forgotten anybody - sorry - please let me know !

100 ladies are now in the group.

In the summer of 2012 I felt totally alone with this condition, I found this group that Celia had just created and our numbers have grown. This is a lifeline for us all. Thank you to everyone for your support and advice. Thanks to Celia for setting the group up last year.

Hi Debs - what a journey we have all been on ! I think you saying the word 'lifeline' about sums it up really.
I look forward to next Wednesday and hope that Heidi and Liz will also be able to make it here.
Best wishes to all ! x

Hi Kath - I tried to send you a message but it didn't work - hope that all is well, Celia x

Hi everyone
Briefly, I was diagnosed with FFA about 18 months ago and have no bodily hair except eye lashes. I was kidding myself that my hairline was not receding any further and the inflammation was improving; however, having seem my specialist a few weeks ago, I've gone from three centimeters to four and a half centimeters over the last six months and the FFA is still active. I was initially really upset but then decided that I had to take back some control and having read comments on this website, took myself off to Belinda Hayle to get my eyebrows tattooed. It was almost 80 miles round trip and cost £450 but I'm delighted with the result - worth every penny (and mile). They look so natural and I don't have to worry about accidentally rubbing they off. It sounds dramatic but I feel so different about the whole FFA situation. In fact, I'm also visiting a Chinese herbalist tomorrow to see if anything can be done about my autoimmune system (I also have arthritis and psoriasis)and if he comes up with anything magical, I'll report back to the group.
Huge thanks to everyone for all the helpful suggestions and support
Very best wishes
Jean

Hi All, I have a follow-up appointment with my derm next week. I've been taking Plaquenil for 3.5 months now. I started with 1 per day for two weeks, and have been taking it 2 x daily for 3 months. I'm also using Clobatesol at night when my tender scalp can tolerate it. I have a question for those who have been taking Plaquenil for a while now. Should I be seeing results yet? My doctor said it would take about two months, but I honestly can't tell if it's helping. My shedding is about the same, and I still have days when my scalp is extremely tender & itchy. It seems that every doctor seems to have a different idea of how long before the Plaquenil starts to work, ranging from 1 month to 6 months. Can anyone share their experience? I don't want to stop taking it too early, but I don't want to waste time before moving on to a different treatment if the current one isn't working. I think my biggest fear is that he'll tell me that there's nothing more he can do for me, and send me home with no options.

Annie I started taking plaquenil in March, my hair is still receeding but it is slower, my derm in the UK (Dr Harries) wants checked my scalp after 3 months and is going to see me again in November... It is like Pam says please don't give up yet it does take several months to kick in and even then there can still be hair loss but not as much as there would be without it.

Celia what time would you like us tomorrow please.....

Good morning, ladies ! Tomorrow I am looking forward to seeing you all any time after 10.30. Polly - my husband will pick you up at the station at 11.17. Safe journey to everybody - am hoping to see Julie, Polly, Debs, Caroline, and Pam - please send me a message if I've missed anyone out, and if those who currently cannot make it, change their minds - you are very welcome ! x

Rebecca you can take plaquenil and doxycycline at the same time, I have a blood test once every 3/4 months with the plaquenil to check liver and kidney function. The last time I saw my derm the FFA was still active and I had been using plaquenil for 3 months, I see him again in November as he wanted to give it more time.... the FFA is still active but it is slower than before... He has said next visit he might also give me doxycycline and has mentioned the steriod injections but I am worried about injections because of the dents they can cause... Your treatment plan is definately the same as we are being given in the UK so it seems that all of our derms are using the same drugs and protocols. Best of luck Rebecca with your new treatment. XXX

Ladies, thank you so much for your encouragment. I've remained positive since my diagnosis almost 7 months ago, but I wasn't prepared for a flare-up two months after starting Plaquenil. I'm hoping my derm will see enough improvement at my appointment next week to keep me on Plaquenil until I hit the 6 month mark. I think I'll also ask him about an antibiotic. He's always felt like I didn't need one because there's no inflammation & very little redness on the surface, but I know others have had good results taking both.

Rebecca Germany, You questioned taking Plaquenil & antibiotics at the same time. christiekd has had good results using both. I think her doctor prescribed something other than Doxycycline, however. You can read her post on page 30. I go back & reread it every time I feel overwhelmed & helpless. It helps me remember that some of us are managing this awful disease.

Jules - not a problem. See you all tomorrow ! x

Does anyone else have problems with static electricity. I've always had slick, straight hair, but now I have hairs flying around and tickling the sides of my face constantly. It drives me absolutely crazy! Also, all the short new hairs I've grown with Rogaine are standing straight up. It's not just the areas affected by ffa that are electric, it's my entire head. If anyone else has this problem, could you please share how you control those annoying flyaway hairs?

Annie i have the same problem with my hair sticking to my face. The texture has changed so much. It's a lot worse when i apply sunscreen or moisturizer. The hairs in my eyebrows that i grew from the steroid injections go every which way. The dents above the brow line are very deep. I have to laugh though, because i don't want to cry.

Brenda, thanks for letting me know I'm not alone. I know what you mean about not knowing whether to laugh or cry. I always thought my hair was my best feature, and now I don't even recognize it. I sometimes think life will be easier if/when the time comes for a wig -- no more bad hair days. I'm trying to be thankful for now that I'm able to hide my hair loss for the most part with the help of a good hairdresser. Still, it would be nice to have a good hair day every now & then. I wonder if the flyaways are caused by the products we're using on our scalp. I use Rogaine and Clobetasol, which are both alcohol-based and very drying. The weird thing is that no amount of conditioner seems to help.

Hi Annie
A lot of the hair on my head has changed. My hairdresser tells me that my hair is growing through in the same way as someone who has had chemotherapy. It's fine and whispy. The bits around the fringe area look like they've got electricity running through them. The rest has gone wavy and is also lighter in colour. The hair on my arms has mostly disappeared and the odd hair that's left is short and grows in a zig-zag fashion. I don't use any products on my scalp xx

The news just gets better & better with this awful disease. Not only are we losing hair, the new growth is getting finer. I tried a thermal protecting product by John Freida for frizzy hair yesterday, which helped. It made my hair glossy & more manageable. The only problem is that my hair is a fine to medium texture, so it weighed it down a bit. Anyway, I actually got TWO compliments on my hair yesterday. I haven't told anyone (not even my grown kids) besides my husband, hairdresser, & eye doctor about my ffa yet because I honestly can't stand the thought of people watching my hairline for changes. Every time I get a compliment (which happens less & less these days), I smile & remind myself that I worry way too much about my hair.

PamW your comment on everything being dry cracked me up! So true! Annie i use Rogaine each night but i rarely use Clobetasol. It seems like it makes my scalp itch. I never had itching until i started all of the treatments. I can hide my hair loss pretty well except when the wind blows. My eyebrows are a different story. Oh well, it could be worse. :)

I never had any itching or pain until I started putting stuff on my scalp. There are days when I consider forgetting treatment, letting the ffa run its' course, and buying a gorgeous wig (or two). My fighting spirit just won't let me give up until I'm out of options. And Brenda, I agree, it could be worse. It's just hard to remember some days.

I usually do not get any itching or pain. I just get bald spots on the hairline. My derm does not understand that I have no indication he says that I am not paying close attention. He even said that he cannot do anything more other than injections which did not prevent the hair loss. I have noticed that the area where the hair fell out is extremely painful if I accidentally touch it with my nails. I have decided on my own to not use any topical steroids since the area is so tender. My thoughts are that the hair will fall out no matter what and I need the scalp to be in the best shape to secure a wig or what ever prosthesis I choose. I am not giving up on treatment but I think that the scalp should be preserved since it needs to be strong.

Any thoughts?
Jen.

I only use an organic shampoo from the brand Neal's Yard. I don't use any conditioner, hair dye or any styling products. I am basically just leaving my scalp alone. I have never had any redness, itching or pain thank goodness. My gut feeling is I need to let my scalp alone.. I am using plaqeunil - with limited success. Am hoping to get my derm to prescribe dyoxycline on next visit.

UK LADIES....

www.surveymonkey.com/s/KQSJTBY

If you type this it will bring up the survey.

This site is set up by Alopcia UK charity. Survey is to find out how much alopecia interfers with everyday life so they can inform the medical profession of the wider impact alopecia has on our lives... it is not just about hair loss... it effects work, hobbies, relationships, self esteem etc..

Thank you Ellen and PJ for your comments re: dermovex - sounds interesting/scary. I will ask Dr Harries about this when I go to see him on October 31st. It seems we humans do all have these mite, but whether they are a factor in FFA or not - who knows ? I am going to wash my hair right now...................there seem to be methods of eradicating the mite on Amazon - I assume one would have to have a test for them prior to any treatment - could it be that they really are an added factor in FFA ?

I do not believe these mites are a factor in FFA. My skin scraping test did not show any mites or anything else unusual. I had to convince the Dr I was seeing at the time to even do the test. I think that something caused our systems to just get out of whack, something that caused us to be more sensitive than the average person. I did see that some people on here had pneumonia as a child. Did anyone else have a major illness as a child? I had pneumonia and scarlet fever. However, I didn't seem to have sensitive skin until I became an adult. Maybe it is still something to do with hormones.

For those of you taking tumeric, how do you decide what brand to buy? What do you look for to know you are getting a good quality? There's so many brands and varying strengths. If I remember right, people were taking 200 mg twice a day.

Hi PJ - I take 1 x 400mg capsule of turmeric daily. It's a SOLGAR brand - free from salt, sugar, gluten etc. It's called Turmeric Root Extract (curcuma longa). I also take a supplement for hair, skin and nails which works wonders for my nails. My hair is very fine in texture, not anything like pre-FFA. I had scarlet fever also as a child. My near fatal pneumococcal pneumonia happened 3 years ago at Xmas. I have said before that I think it messed up my immune system - hence the FFA. My diagnosis was early 2012,but no meds or good dermatologist until late 2012.

Jean - to post a pic - go into Settings which you will find on the top right hand side of the page where you sign in or out. You then upload a photo from whatever is stored on your computer. If you have Skype - put the webcam on and SMILE - get 'caught on camera' ! You can use that image to put on your profile - then just save it and you will see it to the left of the comment box on the FFA page. Hope that makes sense !

Thanks, Celia - finally managed to send through a photo. It's not on the Members grid......maybe I did something wrong!!

Best wishes
Jean