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Comment by Isabel on December 17, 2017 at 1:14pm

Hi AnnieMay

I've also had that particular issue recently - I find that spraying Avène thermal water calms the skin - I would imagine any other thermal water would also work. It provokes a sensation of coldness in the skin and I think it can also work with anything that cools down the area and the brows

Whenever you feel that general region has calmed down a bit you can start applying Aloe Vera gel.

Comment by AnnieMay on December 17, 2017 at 12:46pm

Hello all-all around my eyes and my eyebrows have been itching so much lately. It has been dry here and I thought it would get better now that it's raining again but it's not. It's driving me crazy! Does anyone else have this and thoughts on what helps? As I've mentioned before I seem to have alot of skin issues with this extremely frustrating disease 

Comment by Minter on December 17, 2017 at 3:36am

Claire Julia, good luck with your alignment tomorrow- I washed my system/ hair for the first time myself yesterday and had re-tape the sides down, what a nightmare! That is definitely a learning curve- I had to re-do it three times on one side until I didn’t have tape sticking out and it was aligned properly ugh. I was trying to put the tape on the piece itself and finally googled a way of doing it with putting the tape on my skin first by folding the side piece down and marking with an eyeliner pencil then putting the tape inside the marks, that was a bit easier for me. Do you have to tape any parts of your system? 

Comment by Claire Julia on December 14, 2017 at 3:10am

Very pleased you are happy with your hair, that's fantastic news.

Comment by Minter on December 13, 2017 at 2:42pm

Claire Julia, I’m glad you are happy with your hair, hopefully it will feel better after the alignment- I just had my first wash today (I got it done in London also, it is such a great place, everyone was so nice and professional-I felt like I was in very good hands and nothing was done without my ‘ok’) had the side panels tweaked a bit and my bangs trimmed a little- I did feel it was a little full on the sides at first, but it calmed down on the second day and after being washed it feels and looks better- not that it looked bad I just wasn’t used to having so much hair! At first I was like, oh you can never have too much hair haha! But it was quite full and bulky at first until it’s calmed down, It is now day 3 and I can’t stop looking in mirrors, I’m really thrilled with it- yes it is more maintenance then having ‘natural’ hair I guess, it is for me anyway! 

Yummy Mummy, I think just having the sides and bangs done was the best move for me, I needed something as my sides were very very thin and I wasn’t ready to have the full system and this is just right for me right now- I can tuck my hair behind my ears, I have a medium bob so I can do a little ponytail! I did see ladies coming in with their hair pinned up and pulled back in clips and in pony tails so it all depends on your hairstyle/length  I think.

HBW, I am in the UK now, but I’m back to the USA soon so have to make the trek into NYC which will add to the maintenance costs for me, not happy about that- but It’s either this system or try toppers and other systems or wigs and I didn’t want to go down that route. It’s taken me almost a year to decide to do this because of the journey to and from the salon, the commitment to maintaining the system, the cost and all that’s involved- I’m glad I made the step towards this though.

Comment by YummyMummy on December 13, 2017 at 1:54pm

Hi Minter,

I am so pleased that you are happy with your eyebrows and new Lucinda Ellery hair. I have been looking into Lucinda Ellery hair for some time now as I want to have a back-up plan in place should I need it. I have been worried that I would need a whole hair system placed on my head when actually I only need the edges done but it sounds like they will just do the edges. That way, it feels like you are only having extensions put in, rather than the horrible 'wig' word (not that there is anything wrong at all with a wig). How natural does it look? How is your hairline - are you confident enough to pull your hair back? Were the staff professional and kind? 

By the way, I too had horribly rough, pitted skin but it has calmed down significantly since I started on Lymecycline antibiotic and is barely noticeable now. And good for you treating yourself to facials and eye-lash tints. We all need a little TLC now and again, FFA or no FFA!

Comment by Classical Anne in NC mountains on December 13, 2017 at 12:12pm

An interesting article listing 21 reasons for hair loss.  It does not specifically mention FFA, though it does mention autoimmune alopecia.  http://www.health.com/health/gallery/0,,20727114,00.html

Comment by Halfbakedwho on December 13, 2017 at 5:00am

Hmmm! Very interesting- I went for a consult yesterday at a hair place near where I live. She was very against medicine there, and has a lot of oil/organic treatments instead. She said that as long as I’m on the steroids I can’t do both... she also has nothing in terms of hair pieces for me (I don’t need one yet but if I do...) 

I live in France and would make the trek to London if need be, though it would be crazy expensive. Hopefully I won’t get to that point. I called Lucinda Ellery and they don’t have a place in France. Today my cortisone hair mousse thing is broken - so I’m going without, at least today...

Comment by Claire Julia on December 13, 2017 at 4:24am

Hi Minter, did you get your hair done in London? I've had mine done but feel I have more hair than I need. Think just the fringe and sides would be best. Going on Monday for an alignment and can't wait as the hair is moving a bit.

that said still the best decision I have made along with stopping all medication.

Comment by Minter on December 13, 2017 at 3:37am

HBW, I’m sorry you are going through this now also, I sympathize so much with you- it’s so freaking frustrating! I echo illustr8tr that you have to decide what is best for you, as each of us are going through the same thing yet it’s completely different for each of us if that makes sense!

I’m also one who has stopped all medications except for the odd use of Clobetasol only as a last result, I often use tea tree oil or a blend of peppermint oil & coconut oil on my hairline/scalp instead when it gets itchy along with on my forearms which are my other itchy spots.
My face is also ‘rough’ I’ve decided after the holidays I’m going to start treating myself to a facial every month or two, luckily I’ve found someone who is just starting out so her prices are very reasonable

:-)  so I can afford to do that! I can’t use retinol A or anything like that as my skin is too sensitive, but a facial every month or two, oh I’d like that please!

I get my lashes tinted too which is my little treat to myself and just got my brows microbladed in October which was The Best Thing I’ve done for myself since I’ve started with this stupid disease! The other Best Thing I’ve done for myself was 2 days ago when I got side pieces and bangs\fringe from Lucinda Ellery’s, I’m not thrilled about the every 6-8 weeks of maintenance/adjustments, but not having to hold my hair down when walking in the wind, and have to try and ‘artfully’ powder in ‘side hair’/front hairline & style it to hide the loss every. single.morning-well so far on day 2 I’m thrilled upon waking up with my new hair and I’m sure there will be ups and downs with it but faced with the alternative of life before helper hair vs after, right now I’m thinking that (hopefully) it will be worth it-  

it is so hard to decide what to do about the hair loss, try every medication there is, go with alternative medicine, do nothing- let it run it’s course, get a wig, don’t get a wig, shave it all off, who can say, each person’s experience with FFA is so different. This time next year I might decide to get more ‘hair’ or say take it off and shave it off. 

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