Ohhhhh I am very excited for you Claire Julia! Yes, please give a report, I'm sure all will go very well for you on Tuesday :-)

I have been wearing toppers for three years now.  It is a learning process.  I would recommend getting one now, as even tho you may feel there are some days that are OK, there are many others that are not, and wearing the topper helps enormously with confidence.  Why have any days that you don't feel well about yourself?  Having said that, here is my story.  I started with a small human hair piece that clipped in only and blended with my cut.  Loved it, and wore it for almost two years until it became apparent that my loss was increasing.  First we added a tape to the front where the hairline was receding and for a while that worked, but eventually, needed to move on to another larger piece that had a larger skull cap and was created specifically to fit the loss.  Expensive?  Yes.  Each piece was about $900.  And in between I did get a synthetic for summer, outside, poolside, etc.  Don't wear it much, but have it for emergencies.  The thing about getting one sooner than later, is that as the loss increases, and unfortunately, it does, you want the addition of the newer pieces to be seamless to how you look now.  Only way to accomplish that is by starting with a purchase.  I do not "shave" or make space to glue anything on.  I use tape only for the front area and clip in the rest.  It requires maintenance, learning how to take care, wash and style the piece, fixing and replacing clips here and there, and buying tape, BUT if you find a reputable and helpful stylist who specializes in hair loss you will adjust and learn as you go along and they should be there to help you.

Also, I recently had my eyebrows tatooted "permenant make up" and am very happy with this decision.  

Claire Julia, Thanks for sharing- I bet it will take some time to get used to having this system, I hope it will be sooner then later for you! How was it getting it done? So how does it feel? Is it itchy or anything? What was it like to wash your hair and dry/style it? Sorry for all the questions- I am actually going this week to L. E.'s and am full of questions about it all!

Interesting, do you think your head/scalp is more itchy or a different itchy ;-/ then before? As far as having too much hair, has it "calmed down" since washing it? I'm getting on the train in a couple of hours to go for my consultation with L.E.'s today, so I am very curious and very much wondering what is in store for my own hair, what they think will look best etc..... 

Are any of you on Facebook?  The site I use LPP - Let's Put Out The Fire.  It is also such a support.

Sally, I'm not on Facebook- but it sounds like a good group!

Claire Julia, I feel so bad for you that you aren't so very happy with your hair, I thought about you while I was at  the consultation today, I hope you will get more comfortable with your hair soon, it is such a big undertaking, both emotionally & financially  and then to not be pleased at the end, that is hard. 

 I do agree with you though , the staff is superb! Very patient & professional with all of my questions and concerns. I am fairly certain I am going to do it- on the train back home today I was having a good talking with myself (in my head, not out loud haha)! about it and yes, it is a LOT of money, but I started thinking, what if I was spending the same amount on breast implants, or a nose job or a facelift, this is quite similar really, I guess. 

What it gets right down to, is that I just want to look like me again and stop being self conscious about my hair, which in turn, makes me self conscious about my face and my looks and all of me in general and it seems that this might be the only way that I can start feeling myself again.

Airam, I think you will also be impressed by the L.E. team and the interlace system, I had so many, many questions and then thought of more that I hadn't thought of before while I was there and they were all answered and I never felt rushed at all and they showed me the systems and how it would look on me, obviously not cut or colored or anything at this point, but it was enough that I could get a very good, clear idea of what it would like.  

Claire, it sounds like you have more hair than was natural for you.  Can Lucinda Ellery thin your piece a bit.  Would it be a good idea to take a picture of what you looked like prior to hair loss to your consultation?

Has anyone else been tested for the MTHFR gene.

Hi Gai, apparently many people have a variation of the mthfr gene.  A reason for all the autoimmune diseases?  I have one copy of the less severe mthfr gene (don't have the results in front of me).  I have side effects to many meds so no meds for my FFA.  Have always eaten pretty clean, organic etc.  Take supplements.  Doing laser.  I get sheds after stress so always working on that.

Oh yea, Gai, congrats on less loss the past 2 years!

Here is an easy to understand website.  You may want to check out a medical website also for more in depth information.  I expect more research would need to be done to determine if the mthfr mutation is related to ffa

https://draxe.com/mthfr-mutation/

LATISSE or CAREPROST [Canadian generic] for eyelashes.

I have not been into this forum in over a year, I'm afraid.  But since there are so many newer members, I'd like to ask the broader audience.  Those of you who may have tried one of these Rx to restore your eyelashes, did you find you needed to continue it after you got the hoped for response, to maintain it?  I started it just over 2 months ago, and had such a reassuring response.  Noticed a few new lashes within a couple weeks; and in one month had the full eyelashes of my younger days!  They grew in fairly thick, dark, long and curly.  I am thrilled!  But now, I don't know if I need to continue daily, or somewhat less, or not at all.  As you may know, it is extremely expensive in the U.S., and far from cheap [but so much less] in Canada, for a tiny vial.  Well worth it to my self-esteem, though.  Just don't want to risk losing now by overdoing or under-doing.  Anyone with any experience?

HI Classical Anne! My dermatologist said once you achieve the results you want, you only need to use 2-3x/week to maintain the lashes. I also found a helpful tip to extend the supply: place one drop in the cap and dip the brush in...one drop is plenty for me for both eyes. In fact I brush whatever is remaining on my hairline! Not that I've noticed a difference in my hairline, but helps me to feel like I'm doing something in this helpless disease. Best to you and yours and happy St. Patrick's Day!

Anne Louise, I'm so glad you're still on here.  Strange to miss someone you've never met, but I HAVE missed you!  My vial did not come with a brush or any means of dispensing, other than squeeze, as it was designed for glaucoma drops IN the eye.  So I finally found a sort of micro Q-tip which has worked well.  I don't even really squeeze the vial, just turn it over and let a tiny drop out onto the tiny swab -- more than enough to 'paint' along the lash line, just like an eyeliner.  And it has also left a nicely faint eyeliner/eye shadow effect as a bonus.  But the goal and happy result is finally having eyelashes again.  Thanks for your response.  I'm glad I can cut back to 2 or 3 a week, so I can afford to continue.

https://smile.amazon.com/gp/product/B00F9144ZM/ref=oh_aui_search_de...

Anne I miss you too in a virtual way I guess! :-) I like those applicators you linked to rather than the Latisse brushes. I haven't been using Latisse for several months, was last fall after panicking thinking my lashes were thinning and falling out. I just get tired of the maintenance! I'm a low maintenance gal (or just lazy I suppose) and have a hard enough time washing my face at night let alone all the creams and applications I've tried the past few years. I just had to change my thyroid meds and was very hypo for about 6 weeks...it was awful and I also noticed more shedding. I'm back to normal thyroid wise now and am hoping my hairloss will slow down. I can still disguise it for now but not sure how much longer.

Anne, I'm sorry you continue to have thyroid issues, beyond the norm.  If you have not used the Latisse in several months, have you seen any loss of lashes?  How far gone were yours when you began?  Mine were about 75% missing, about 8 to 10 short, thin, nearly colorless lashes.  I am thrilled that they are now naturally dark and curled [like my hair, what's left of it].  What style are you now wearing your hair that disguises the loss?  I've recently cut mine very short, which works fine at home and most errands.  But I never go to church, out to dinner, etc. without one of my wigs.

Hi,

Has anyone used methotrexate for FFA? My dermatologist is recommending it as nothing else seems to work.

Was it effective? Did the regrowth last? Were there horrendous side effects?  Grateful for any info to help me make decision.

I've been taking Methotrexate for about 2 years now, going up and down on doses. It hasn't given regrowth - it isn't meant to. It is supposed to stop the inflammation and red and itching. Which it seems to be working for me without any side affects. I did have to have a liver biopsy as it can affect your liver after taking it for a while, but it came back fine so I've continued taking the med. I don't notice much redness or itching, unless I go too long between washing my hair.  I did try Plaquenil but had an allergic reaction to it - hives. 

Hi Beez, your experience is almost identical to mine, even the left eyebrow disappearance being more prominent. I lost all my hair on my legs and arms some years before the FFA (which I don't mind that part) Not sure if that is related or menopause. My Dutch grandmother and her sister also didn't have hair there. Anyways, hoping for a cure to stimulate and dissolve scarred follicles :-(

Hi, I am new to the group.  My forhead is so high now I feel the need to get bang extensions.  Can anyone recommend the best place to order a piece?  It would be nice to find a piece that is also a head band.  Thanks for any recommendations!

I just had a consultation with Lucinda Ellory in NYC and am interested in getting the intralace minima. Could those who use it give me some of your experiences, both in terms of pain or scalp inflammation or additional hair loss, not associated with LPP/FFA. Thank you!

Alopecian Beauty Mixer,

How do Canadians get details of your event?

Like Annie55, I had been diagnosed with rosacea many years before my FFA diagnosis although it has seemed to be under control. On the other hand since August 2016, I have been getting styes (chalazions) and what I think are dry eye symptoms. I  have been diagnosed with blepharitis. The eye problem seems to have started about 4 months after I started getting Kenalog injections. I don't know if any of this is connected the FFA with the rosacea with the blepharitis, or the eye problems and the injections.   Or, as some have said, maybe this is a case of once you have an autoimmune issue, you get others. The FFA is bad enough without having styes on my eyelids (sometimes three at a time)  Anyone else seen any similar pattern ?

HOW MY HEART DISEASE WAS CURED BY DOCTOR AGIE KHERE
I thank God for my life, I will says to the world to celebrate this great testimony with me, i never believe i can ever get rid of these horrible disease one day. My story and thanksgiving goes to Doctor Ogie Khere the powerful man who helped me to cure my Heart disease from my life. I don't know how to say this to everyone, Doctor Ogie Khere is a truthful man with high herbs power's he uses to save people's life. Last few days i came in contact with Doctor Ogie Khere emails on the internet which people gave much testimonies about his kind fullness work. So i decided to contact him quickly because this disease was almost on the last step of taking my life from me. I have tried all my best in life to get heal but nobody could ever help apart from Doctor Ogie Khere who finally help me to cure my Heart disease from me. I always amazed and overwhelmed when the doctor confirm that i am now healed from Heart disease, because i have tried so many Doctors, who go away with my money, i am an Heart disease negative patient. I wish anyone who is sick today and wants a healing please i will kindly advice you to contact this man called Doctor Ogie Khere now at: doctorogiekhere@gmail.com To get this powerful healer full article and trust on his origination and references please visit him now again at: doctorogiekhere@gmail.com I thank God for my life today i am free from disease, may God bless you all Amen

HOW MY HEART DISEASE WAS CURED BY DOCTOR AGIE KHERE
I thank God for my life, I will says to the world to celebrate this great testimony with me, i never believe i can ever get rid of these horrible disease one day. My story and thanksgiving goes to Doctor Ogie Khere the powerful man who helped me to cure my Heart disease from my life. I don't know how to say this to everyone, Doctor Ogie Khere is a truthful man with high herbs power's he uses to save people's life. Last few days i came in contact with Doctor Ogie Khere emails on the internet which people gave much testimonies about his kind fullness work. So i decided to contact him quickly because this disease was almost on the last step of taking my life from me. I have tried all my best in life to get heal but nobody could ever help apart from Doctor Ogie Khere who finally help me to cure my Heart disease from me. I always amazed and overwhelmed when the doctor confirm that i am now healed from Heart disease, because i have tried so many Doctors, who go away with my money, i am an Heart disease negative patient. I wish anyone who is sick today and wants a healing please i will kindly advice you to contact this man called Doctor Ogie Khere now at: doctorogiekhere@gmail.com To get this powerful healer full article and trust on his origination and references please visit him now again at: doctorogiekhere@gmail.com I thank God for my life today i am free from disease, may God bless you all Amen..

Hallo :) Just wondering if anyone has lost hair from the back of their head? I've lost a good (bad) few inches from the front and now if disappearing from the nape upwards. I don't really care as my hair is now beyond anything that resembled a decent head of hair but am just curious to know what's happening to everyone else xx

Yes!  I noticed about six months ago that I was losing on both sides of the nape of my neck.  I noticed it when I accidentally saw the back of my head in a double mirror.  I never look these days.  I felt the area and was able to feel the scar where hair had once been.  It is so frustrating. I don't know how much longer I will be able to wear the toppers I have now.  Liz, do you wear a wig all the time?

So far no loss there, but the forehead and particularly the area around my ears and back from my face have increased loss.  I will never understand this, ever.  In my life of all the things that could have happened to me (and I have already survived breast cancer) would I imagine such a bizaar and utterly no words for occurance, disease, whatever you want to call it, happen to me. It makes no sense.  

A reply to Liz - I don't know how to reply to your comment about hair loss at the back on the comment wall!

After getting scalp injection last month, the nape of my neck has been really itchy. My derm checked before doing the second round of injections but could not see anything but there is so something going on. I can't stand scarfs or high neck lines now as they irritate :(
Jacqui

Hi Sallylwess. At the moment I have an intralace system which I have had for about 18 months. I like having it as I can go out without worrying that it'll blow off in the wind and it looks good. It is expensive so I am looking for a cheaper option in the future. Also if my hair keeps disappearing at the rate it's done over the past 5 years I'm not sure what the system will attach to in years to come! My mum also has FFA and she wears a wig which looks fabuous on her.

Sad in Chicago, it is such a bizarre disease isn't it. I wish there was more awareness of it. My mum has it too and we joke that we must have walked under a toxic cloud some years back.

Jacq. I started a new job in January and have to wear a top with a collar. The collar really irritates my skin, something it would not have done prior to having FFA. The skin on my face has changed too and I have very dry eyes. I'm always having to use lubricating eye drops.

xxx