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Lo's Discussions

Plaquenil versus CellCept

Started this discussion. Last reply by Lo Aug 7, 2015. 2 Replies

I just returned from my 6 month derm visit.  I was diagnosed with FFA about 6 months ago (have been losing hair for 4 1/2 years)... and was immediately put on plaquenil.  The derm told me today that…Continue

So sad...

Started this discussion. Last reply by Cheyenne Feb 2, 2015. 5 Replies

I was officially diagnosed this week. I knew what it was, but hearing the words hurt so badly. My dermatologist seems to have such high hopes that we will keep this under control with plaqenil and…Continue


Started this discussion. Last reply by Patricia Jan 31, 2022. 1 Reply

Has anybody's FFA hit the "burn out" stage - and if yes, about how many years did it take?I have about 1 inch of hair loss - to a point where I can still wear my hair cut, and have it go fairly…Continue

Tags: Help, -, Alopecia, Fibrosing, Frontal

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Patricia replied to Lo's discussion Hope?
"Hello, My FFA started back in 2010, and to this day it still has not burnt out.  I have been lucky to have some hair regrowth on the frontal part, but never on the sides.  I can still wear my hair cut normally, but have to be careful on…"
Jan 31, 2022
pandrew and Lo are now friends
Jul 15, 2021

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About Me:
Lost eyebrows in 2010-2011. Had a spot of hair missing above each year - and was diagnosed in 2011 with alopecia areata. In January, 2015, I questioned why the spots were progressively getting bigger above my ears - and progressing to my temple area - and finally the doctor said we should test to see if it is scarring alopecia. In January, 2015, I was diagnosed correctly with FFA. I'm on Celcept, Actos, and Finasteride.
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

Lo's Blog

Frontal fibrosing alopecia - help

Posted on January 26, 2015 at 3:30pm 4 Comments

Good afternoon. My name is Lori, and I have been losing hair for close to 5 years. It started in 2010 as a tiny patch above my ear - that my hair dresser saw. Then that got bigger, and the same thing happened on the other side (above ear). I am still to this day, able to "hide" it, as I have a bob haircut, and unless the wind blows, or my hair is wet - you cannot see it. Recently, I went to my derm, and asked if she thought it would stop. She said I had some follicular erythema along the…


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At 5:22pm on March 22, 2016, DeniseC said…

Hi Lo

It's really clever. Have a look at this .... http://www.lucindaellery-hairloss.co.uk/ffa.php  My FFP is nowhere near as bad as this. They attached the webbing - the intralace system - by bringing my own hair through it and (sort of) knotting it to new hair. That anchored the system. They did this all the way round, then attached a complete section of new hair - a 'natural' parting - which completely covers the bald bit at the front. I have had it for exactly two weeks, and now I am used to it, I LOVE it. I cannot tell you how different it makes me feel. And no one knows (other than those I choose to tell, of course). Lots of people have commented on how well I look and how good my hair looks - a new colour? A new cut? YEAY!!!! have a look on the website which explains it all (far better than I can).

One thing going to them made me feel was okay about the condition. I had so many months/years of feeling negative about myself and how I looked, and they normalised the whole thing. So now, if I choose to tell someone why I look different, I will, and without any sense of shame or embarassment. Because, guess what? We didn't choose to have this condition, and it is bad luck, nothing else. And absolutely nothing to be ashamed of.

Having said all of that - and firmly believing it, too - I am unbelievably pleased to look like me again!!!

Denise x

At 10:37pm on June 25, 2015, Will Be Healed said…
Yes, it was helpful to some degree. I had some small bald spots fill in that we're on the top of my head. For some reason it hasn't helped my sides. Yes, I believe that God will heal and we just have to leave this disease in his hands. It is hard to stay focused on God when the visual is there everyday, but I continue to say to myself if Jesus can heal blindness and leporcy, Jesus can heal me with my continued strong faith. We need to pray for each other since there is power in prayer, especially when two or more pray together. Thank you for sharing your faith with me. Will pray for you Lo.
At 10:55am on June 7, 2015, Chris said…
Hey Lo,
Yes, roughly 2" in probably more like 2 1/2, three years. I was in denial for about a year;). My loss started in the front. It thought it was a few pimples that wouldn't go away. Then I thought it was a fungal, or bacterial infection. My regular doctor was giving me antibiotics to clear it up. Finally I went to a dermatologist and had a biopsy. I didn't connect what was happening to my eyebrows to what was happening on my head. Then one day I looked at my arms and noticed, "Hey,ALL of my arm hair is gone! It's amazing how I was able to ignore what was happening for so long. I'm at a crossroads now where, I'm not sure what I'm going to do with my hair. In the not too distant future, I'm going to need a wig, or hairpiece. The loss rate seems to cycle on and off. It's been ramped up as of late. I think it is connected with my allergies, which are in high gear. I've always noticed big jumps in loss in the spring/summer. Who knows?
At 6:25pm on June 2, 2015, Chris said…

Hi Lo,

I'm attaching two recent pictures.  I have curly hair, which makes it easier to hide the loss sometimes.  in one picture ( the one with the sunglasses) I have my hair pushed back and tucked behind my ear exposing the loss.  Sometimes I tuck it back behind my left ear and just let it all hang out.  The other picture is from today.  I push my hair forward at work to hide it a bit more.  I wear a pretty deep side part and longish bangs.  It looks pretty messy in the photo.  I work at an Elementary school.  We get messy :). I don't have any eyebrows left, so I paint them on to fairly good effect.  I've tried short, "hipster bangs" before, but it really doesn't work, because my bangs are too thin, so I've been keeping them longer and a little messy.  Now that the school year is coming to a close here in NY, I'm contemplating something radically different, like an under cut, or a pixie cut.  I'm not sure.  Oh, and by the way, you're in Pittsburgh, right?  I'm originally from Erie, PA, I'm very familiar with yinz;) IMG_0936.JPGIMG_0965.JPG

At 7:50pm on June 1, 2015, Chris said…
Hi Lo,
I'm not taking anything. I tried topical steroids for a while, but it didn't seem to help. I don't want to deal with the side effects of some of the treatments out there. My loss is still pretty active. I get fewer of the red bump, flair ups since going gluten free. I try to reduce systemic inflammation in my body in general. I look at my situation from a whole body perspective. I don't think it's just about my hair. I think my allergies, skin issues, asthma, and alopecia are all tied together somehow. I'm just trying to make my health as good as I can, and accept the hair situation.
At 8:30pm on April 21, 2015, Brenda, IL US said…
I must be dumb as a box of rocks. I can't remember how to send you a pic Lo.
At 11:10pm on April 2, 2015, Jinzy said…
Hi, Lori! The biopsy will be able to determine if you have FFA, that's how I was diagnosed in December 2014. I first lost my eyebrows then my hairline began to recede. My doctor prescribed me Finasteride and Clobetasol solution to put on my hairline daily. The receding has stopped and I'm thrilled! That's all i wanted, just to stop the progression. Good luck at your appt! :)
At 1:14am on February 18, 2015, LeslieAnn Butler said…

Hello and welcome, Lo

How are you today?

At 5:25pm on February 2, 2015, Tomy Pereira said…

Hi Lo, thanks for accept me :) I also have alopecia universalis, if you want to talk a little with me about it, I am with open arms.

At 11:58pm on January 29, 2015, Sad in chicago said…

Will get you pix.....sorry I forgot and now off to vacation.  Interested to see how the synthetic topper will work as that is what was recommended for beach, etc. where I am headed.  More later.  Thanks.



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