Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

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

Location: Dubai UAE
Members: 528
Latest Activity: 28 minutes ago

Discussion Forum

Best Toppers for women with FFA

Started by Rose. Last reply by Sad in chicago 28 minutes ago. 1 Reply

Ok I decided a good discussion topic that could help many on here  is one about toppers. I have FFA not diagnosed officially but it been going on for about fours years and is too noticeable now I am looking into many type of toppers to purchase. The…Continue

Trying a new approach with CBD oil...

Started by Robin. Last reply by Loveste 7 hours ago. 14 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Regarding my successful trial with cannabis oil tincures!

Started by Robin. Last reply by Hans755 on Thursday. 62 Replies

I am letting you all know of my trial of using cannabis oil tincture on my hairline for the past 4 months. I was diagnosed with FFA about 5 years ago. I have used finasteride and clobetasol as well as tried steroid injections and doxycycline. I also…Continue

FFA too young

Started by Rose. Last reply by Rose Oct 9. 8 Replies

I am 100% sure I have ffa I’m only 23 years old and its really affecting my self confidence and my life. I have had alopecia arerea bald patches also. My bald patches started about 5 years ago but was very unnoticeable but around that time in…Continue

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Comment by illustr8r 2 hours ago

@HalfBakedWho Gosh girl you have so much hair! I’m envious! I’m like AnnieMay-fine hair. I used to have lots more of it and could rock a shiny bouncy bob like nobody’s business. Now, I’ve lost so much volume and my super short pixie looks almost slicked down because it’s just...there. My front hair line looks like yours. I think my right side is receding to match my left. Not fast, but it’s going. Dammit.

Comment by Halfbakedwho 11 hours ago

well, thank you guys anyway! I don't know if it's comforting or distressing to know that my hair looks like your hair  : / - I suppose it means I'm in the right place, not that I had any doubt about that. My doctor consult is next week, and apparently, he will do a biopsy. Frankly, I have other fish to fry - I can't worry about my lousy scalp - but worry I do anyway. I sound more cavalier than I actually feel. 

I don't like the way headbands look - to me it looks like there's something to hide. It just seems to me I've lost quite a bit of hair since last June or so - it's probably just a centimeter but that's a lot at this point... 

Merci everyone. 

Comment by AnnieMay 12 hours ago

Halfbakedwho-I wish I had some ideas as well but I have the total opposite problem with thin fine hair.(I've always had thick hair until now) The top of my hairline looks similar to yours but I have more loss now on the sides above my temples making it almost impossible to hide with my ever thinning wispy bangs. My hairdresser has to keep going further back to find any bangs.

Minter-I've also thought about the interlace system but my scalp is so sensitive that I can't imagine having it on my head either. 

I wish I had something positive to share. Good luck with your consultation!

Comment by Minter 14 hours ago

@Halfbakedwho- my hairline looks very similar to yours, except you have that wonderful thick curly hair-love it!  

I wish I had some new, great, advice to give you-but I have none, other then using powders and makeup to help make the loss look less noticeable which is where I am at now even though I went to Lucinda Ellery last year for helper hair and what they did looked great and natural, but I couldn't handle having it on my head (they used the intralace system and added bangs and side pieces).  

I'm sorry that is all I've got, but I really hope all goes well with your consultation!

Comment by Halfbakedwho yesterday

Comment by Halfbakedwho yesterday

Definetly noticing more hair loss on the top of my head. I will be calling Any Davray (hair people) to see what one can do for me - it seems the hardest thing (I repeat myself) is the very curly hair. There’s a picture up on the FFA FB page of a woman who just got new hair - I am at the same place she was before she decided to get her hair. With the curls I am hiding the loss but it’s getting harder to do on top. If I’m feeling brave I will give you a picture - if you have advice (again it’s because of the kind of hair I have) please share.

Comment by BubbaLu on Wednesday

Half baked - 

This Balding Buddy appreciates your humor.  Glad you are back.  

I have been taking Plaquenil generic version for 3 months now and had a check up yesterday.  My doc sees a lot less redness & bumps and there seems to be some new growth.   I take 400 mg a day.  Does anyone take a higher dose than that?   If this is working, I would like to up my dosage.    My doc has required bloodwork every month & vision  tests to make sure my body is tolerating the meds.   All appears to be okay. 

Comment by Halfbakedwho on Wednesday

So my friends, am going to see a new specialist in Paris at the end of the month. Apparently, he prescribes Dustasteride. Side effects possible - trouble urinating, swelling of the face, breast pain... 

BUT apparently, it stops the progression of hair loss in 7 out of 10 cases, according to him. 

I feel like this is a real dilemma. I have definitely had more hair loss over the fall. I would, of course, love to stop it. But I don't know if it's worth it. I am feeling okay these days, if overworked, and though my hair is not great and it's hard to style, I don't think I'm willing to take this medicine. I sort of wonder why I'm going to consult him, but I think it's to feel like I'm doing SOMETHING at least, instead of watching my hair leave my head, passively...

I had stopped using the email where I was getting updates on this board but I just switched it so now I hope to be back here chatting hair follicle fun with all my balding buddies. Please take that well my sweets ; )

Comment by Afraid on Wednesday

Thanks so much for taking the time to reply @ illustr8r

It’s good to know some hair grew back with clobestal and castor and that it’s hopefully stable Other than a slight flare...that’s very reassuring.

I guess I look on the internet and only see worst case scenarios and don’t know the time scale.  One year or so post diagnosis I am in a better place, I still can’t accept it.,still fearful and scared of what’s ahead but I have learned to seize the day and be thankful I’ve not got a terminal disease and my family are well and hair wise my mantra is ...this is the best it’s going to be.  I still hope by some miracle it will stop. 

It’s so difficult to know what to do next, it takes 6 weeks or so for a wig or hair piece.... sometimes you simply can’t imagine how it will look in 6 weeks... 

Im so grateful for your reply, thank you so much xx  

wishing everyone hope and strength to overcome or manage this condition and it’s effect on our lives 

Comment by illustr8r on October 16, 2018 at 6:35pm

@Afraid With my big flare I’d say I lost about 30%+ of my hair overall . The sides and temples have receded the most-2.5 cm. I grew back some hair on the sides and top so my bangs aren’t so stringy. This was the combo of Clobetasol and Castor Oil. I’m always losing hair-I see it in the sink and shower but it’s a lot less than it was when the flare was happening. 

Ive had a minor hiccup recently (red dots at my widows peak and itchiness on my neck) but it’s very mild compared to what as happening before. I feel relatively stable but sadly that can always change and no one knows why.

 

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