Replies to This Discussion

Permalink Reply by DeniseC on November 14, 2016 at 5:17pm

Hi Sally (and Charlotte - a joint response) - you could be me. Not that we look alike particularly, but the same sort of age, and emphatically the same sort, and level, of hair loss. But, boy, love the eyebrows!!

It's all so bloody difficult sometimes. For much of the time these days (since I got 'sorted' with the interlace) I just plod on, not thinking much about the fact I have someone else's hair plonked on top of my head. But sometimes, especially when I wash my hair and see the actual hair loss (very similar to your own), it just all feels so depressing.

But Charlotte, PLEASE try not to feel ashamed. That is precisely what I felt, as if somehow FFA was something within my control, which of course it isn't. Just look at your beautiful three-month old, and let that love shine through. Forget the hair - that is not what people will be looking at. And we all know that if you feel totally uncomfortable having a photo taken (I always do), that is how you appear on camera. Be natural and the photo almost certainly will be better, and more to your personal liking.

AND make sure whoever is doing the photoshop takes enough shots for you to choose one you like. There is no reason whatsoever in this era of digital cameras for anyone to have to accept naff photos.

Enjoy your photoshoot (if you can) and - much more importantly - enjoy your family. That is, after all, what the photoshoot is about - celebrating your loved ones. So celebrate!

Denise x

Permalink Reply by sallylwess on November 14, 2016 at 11:03pm

Thank you for your response DeniseC.  Thank you for your complement on the eyebrows too! I also love them.  I had them done in New Orleans when I went to CARF conference this summer.  They have made a great difference in my confidence.  I felt like I at least got my face back if not my hair.

I wear a custom made topper most of the time.  I would love to have the interlace, but the cost is prohibitive to me due to the travel involved.  Have you been happy with the interlace?  

Your words to Charlotte echo my thoughts and my words to her which I wrote before reading your.  We must be here for each other and support each other.  Sally x

Permalink Reply by DeniseC on November 22, 2016 at 3:16am

Hi Sally

Sorry - I have been away so only just read this. I am indeed happy with the intralace - it looks natural and no one knows it is not my own hair, unless I choose to tell them. Not cheap - and you definitely need to go back every six weeks to have it adjusted as your own hair grows (I tried going longer to save money - a mistake, as it felt very floppy!). But the benefit of having something that is attached to my hair is enormous - the wind doesn't matter, and I can swim and do anything at all without fear of it disappearing!

I've had it for eight months now, and had one replacement of the actual hair. They told me it would need replacing (as it gets dry and obviously it eventually sheds) every four months, but I lasted seven, which I was pleased with. And every two years you have to have the whole thing replaced. However, my one concern is that my hair loss has continued and I won't be able to last that long as, of course, the intralace is attached to my own hair at the hair line. It's fine now, but as you know, FFA creeps upon you. So we shall see.

As for feelings about all of this - I am definitely much, much better for having admitted the problem and told everyone, and for doing something about it. But I still have bad days. But then without the FFA I would have had those bad days - about something else! Aging tends to do that. But then so does life!

Denise x

Permalink Reply by SJC on November 21, 2016 at 9:19pm

Charlotte & Sally,

My hair derm has stated the papules can be improved with lasering. I have an appointment with another derm to discuss this in January.

I fully agree that this disease is really crappy! At the CARF conference this year I learned that not only the papules at my temples and on my forehead, but also the weird skin (not quite the same as the papules) on my chin are also part of the FFA process.

Easier said than done, yet stay positive ladies. I'm starting to realize that fretting over this disease does so little to help and maybe even hurts.

Permalink Reply by Charlotte on January 30, 2017 at 4:18pm

Dear SJC
How was your appointment with the other derm? Did you talk about lasering? Any other ideas how to deal with the facial papuls?
Thank you for your help!!

Permalink Reply by SJC on May 14, 2017 at 11:54pm

Sorry Charlotte,

I haven't been monitoring this board lately.  My derm did not want to laser.  As a first course of treatment she put me on Zen Obagi.  Hydroquinone, retin-A and a mild scrub for exfoliation. I've done a similar Obagi treatment 15 years ago.  She was really concerned about my active FFA and didn't want to do anything to make it worse/inflame my skin etc...  I've seen some success with this regime in the last 5 months.  

Permalink Reply by Charlotte on May 16, 2017 at 5:05am

Thank you for your reply!
What or who is Zen Obagi?

Permalink Reply by Ruth on May 7, 2017 at 9:54pm

I have those exact papules as well. I hate them. It makes me stare at my face closely more often. Then I start inspecting my hairline etc. I'm on a vit a type cream that seems to be doing nothing. Called differin. However I have her that laser light therapy works. I just don't have the money right now. All these scripts cost so much!

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Permalink Reply by Anne Louise on May 8, 2017 at 4:20pm

I can't seem to find the post now, but someone here had a link regarding Accutane. It was a small study where 3 women with papules used it and had excellent results. I thought I might try it but am wary of the side effects. I had been using emu oil, with the thought I was fighting inflammation. But if Accutane was successful, perhaps we should take an acne/infection approach. I started using salicylic acid facial wash every night; I have dry skin so I used to only use it occasionally. As with all things FFA, the changes are subtle, but I do think there is improvement in the appearance of the papules. I can say with certainty the condition hasn't worsened.

Has anyone else tried it? Neutrogena makes it but I just buy the cvs brand...it is an orange solution that contains 2% salicylic acid. A nurse practitioner I used to work with recommended it for teenagers with acne.

Permalink Reply by Ruth on May 8, 2017 at 5:27pm

Hmmm I've never tried that! Will look into it. I'm using a face cleanser daily called la Roche pose toleriane- derm recommended it so nothing else irritates it. Ugh

Permalink Reply by Leni on May 10, 2017 at 5:36pm

One hesitation with accutane is that you are probably not going to be able to do microblading for eyebrows if that is something you needed to do.

Permalink Reply by Charlotte on May 11, 2017 at 1:16am

Dear Leni, why cant microblading be done??
I had Microblading 2 days ago
My derm gave me isotretion but i have not startet taking it yet
Thanks for your help

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