Frontal Fibrosing Alopecia

Information

Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 473
Latest Activity: 3 minutes ago

Discussion Forum

Has anyone had/tried cortisone shots to scalp?

Started by LVL. Last reply by YummyMummy 17 minutes ago. 14 Replies

 Hello everyone. I am a 34-year-old with frontal fibrosing alopecia. Diagnosed a year ago I have tried a few medications but they have made me ill. I am now using a finastride and minoxidil compound on my scalp again. I had stopped using everything…Continue

Low Estrogen and Tamoxifen as Risk Factors

Started by Jess. Last reply by Beez 3 hours ago. 3 Replies

Hi All,I mentioned before that I get alerts when new research about FFA is published. I found this interesting, as when I was in my mid-20s, I had about 3-year period during which my period would never really stop. I was always at least spotting and…Continue

biospy results

Started by Erika B. Last reply by pauliegirl 4 hours ago. 1 Reply

hi FFA people,I am new at all of this but I got a biopsy done and it came out negative for FFA and rather it is saying that its non-scarring alopecia and rather it is called androgenic alopecia.My doctor - who is a resident- is saying that the…Continue

Has anyone lost their eyelashes?

Started by CurlyK. Last reply by Lauren Dec 6. 10 Replies

Hi everyone! I've been losing hair for nearly five years now and was officially diagnosed a year and a half ago. I lost my eyebrows and had them tatooed on a year ago and I wear a bonded semi-permanent topper. Now my eyelashes are coming out. Has…Continue

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by YummyMummy 3 minutes ago

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 1 hour ago

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 8 hours ago

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 9 hours ago

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 10 hours ago

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. 

Comment by Minter 10 hours ago

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. 

Comment by Halfbakedwho on Monday

would you guys mind sending - maybe privately if you prefer - your headband sites, or wiglet sites? When I look at the headbands they are huge and not adapted to just hair loss in the front. Are they a pain to wear every day? I am projecting myself down the road for six months/a year when it may become a part of every day getting dressed : ( !!!

Comment by illustr8r on Monday

Halfbakedwho-all we can do is the best we can. Listen to your dr and listen to yourself-you’ll know what the best plan of action is. I’m limited by sub par Kidney function as to what drugs I can take and how much. Say they develop a cure, I don’t want to have lost some degree of kidney health trying to save my hair with a drug that ‘’might’ help. I would take a risk on one that will cure it once and for all.

my biggest flare was caused I think by the shock and stress of my hubby being laid off from his job after 18 years. He was laid off in January and I was in a major hair loss flare in February. Life happens and does this mean every bump in the road my hair falls out? I hope not! Hang in there. :)

Comment by Halfbakedwho on Monday

well, thank you for your supportive honest responses... very strange. No actually it's not strange - I can practically directly correlate it to some stressful news I received last week. The news has been resolved, but I can't wrap myself up in cotton to stay unstressed for the rest of my life which I still hope will be long. It's worrisome what you are saying about the Clobetasol. I'm on the mousse now, which I put on my affected scalp every morning. She told me that the next step is injections and of course a biopsy. So far I prefer to follow instructions : ( - at least I feel like I'm doing the best I can. I lost a centimeter on top of my head, and the patches grew on the left. 

In one thing I suppose I'm lucky - my hair is very thick, and always has been. So though the front is gone the rest is very much there. 

The whitish skin is just paler than the rest but not too horrible (so far). Spent last night looking up headbands : (. Going to make an appt at the hair place, but my kids say it still looks okay enough (they are brutally honest). 

Comment by illustr8r on Monday

AnnieMay- I had used RetinA for years and I really don’t know if it helped me with wrinkles or age spots. It’s drying and you have to watch your exposure to sun-which I did- but I have several pre-cancerous spots on my face that have to get frozen from time to time. I gave up on expensive creams from the Derm or at the beauty counter. I use Ponds cold cream to remove make up and Ponds Facial Moisturizer (but not to my hairline). I’ve been using Mabeline Dream Mousse and Mabeline Dream Velvet for my foundation. It covers my lumps and bumps and spots really well-and there isn’t any sunscreen which I know might be a FFA trigger. I put castor oil under my eyes and on my head at night. My skin- blotchy and red under the surface. It feels thicker. The worst areas are my chin and the skin about 3” out from the corners of my mouth. My forehead is smooth as glass-no need for Botox there! I use generic Latisse for my eyelashes-a good purchase almost equal to my micro bladed brows. Is a dailygrind isn’t it?  Out and about I look for women my age-envious of their hair and eyebrows and not a care in the world. They just get ready and go just like every other day in their lives...ugh. !!!

 

Members (473)

 
 
 

Badge

Loading…

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

AlopeciaWorld.com: It's hair loss support at its best!

© 2017   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service