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Comment by Linda from Cincy on September 1, 2015 at 7:19am

...also why does "burnout" occur when loss reaches somewhere near the middle of the scalp all-around.  What is it about the hair follicles towards the back of the head that protects them from whatever (DHT?) is destroying the frontal scalp follicles?   Because FFA seems to come to a dead stop when it gets to those follicles.

Comment by Linda from Cincy on September 1, 2015 at 7:09am

Thanks Kat and Maddy for sharing that you both were on bio identical hormones when you were diagnosed with FFA.   That's a little discouraging as I am hoping  restoring hormonal levels might help (specifically progesterone) but good to know not to put all my hopes in one basket. 

My FFA started maybe three years ago (age 58) with gradual loss of my eyebrows.  Actually I started losing my eyebrows in my early fifties but use of steroid creams brought them back.   When they started disappearing again three years ago I expected the cream to bring them back again but it didn't.   My derm at that time diagnosed my loss of eyebrows as  "alopecia areata" but I now realize it was the start of FFA (which was diagnosed with a biopsy in July 2014 when I noticed redness around my (now non-existent) widow's peak.  

My scalp loss has been slow and is still hidden fairly well with my bangs and my hair is fairly thick.  Eyelashes not affected as yet.   I was never a "hairy" person but in the past year have lost all the hair on my arms and skin looks strange (like one of those freaky hairless cats).  I realized I haven't had to shave my legs for many years but remember my Mother was like that in later life and she didn't have FFA.  

Probably TMI but I still have underarm and pubic hair, that hasn't changed at all when I don't have a trace of body hair anywhere else.  What is protecting those hair follicles so they remain unaffected?   Which leads me to think there is some hormonal connection. ..but what??   As you all know this is so frustrating!

Comment by Sas Holland on September 1, 2015 at 1:59am

The problem with (transpants in general) is not so much that the FFA might come back, but that it most probably will be triggered agai by the little incisions they make for the transplant. That's what I have been told in Amsterdam where they perform stemcell transplants. My derm ssys only stemcel transplants are an option for FFA patients, because those incisions for planting the stemcels are much smaller than for a normal transplant. But because of this risk of triggering the FFA I had to take strong medication for about 5 or 6 months ( cyclospirine). That's the reason I didn't do it. I can hide my FFA still pretty well withmy bangs and don't want to take the Cyclosporine( this is what kidneytransplant patients have to take for the risk of rejection, it will kind of shut down your immunesystem)

Comment by Sad in chicago on August 31, 2015 at 11:15pm

Wow, SAU, those sites are interesting.  I went to a plastic surgeon recommended by my dermotoligist.  He was not familiar with FFA, but did think transplant might work.  I went through his gallery, etc. and saw good results, but was worried after hearing that if the FFA returned, it could fall out again.  He was not aware of this and so we didn't discuss.  He thought we could try a small test area, but the cost is unbelievable and I got discouraged.  

I might look into this again based on your research too.  I guess the biggest question to everyone here is do you know anyone or have you had a successful transaplant.  And what is the story if it comes back.  

Comment by MJ on August 31, 2015 at 9:22pm

I appear to have a mild or slow moving version but I did not lose my eyebrows first. They have thinned but are holding on with rogaine and elidel. Let and arm hair is almost non existent.

Comment by sadandunsure on August 31, 2015 at 9:09pm

I wanted to post these in the main board as well

While there is no certainty that long-term results will remain, I've come across a few pics of hair transplant with scarring alopecia. I don't think it's hopeless. And for those of us on here who are dealing with this in our 20's and 30's, buying 2-6 more years with an in tact hairline could mean the world, even if it were to disappear again.

Also, It seems like those with CCCA and LPP get transplants (somewhat) frequently with success. Is CCCA easier to treat? It seems like I see more success stories with that.

Here are two frontal fibrosing/lpp -

http://mdnewhair.com/tag/dr-marc-dauer/

http://www.hairlossexperiences.com/view_topic.php?id=4493&forum...

https://hattingenhair.wordpress.com/2014/10/21/hair-transplant-resu...

LPP

http://www.truedorin.com/photogallery/case-studies-female-3542/1200...

Unidentified scarring

http://www.womenscenterforhairloss.com/photo-gallery/follicular-uni...

http://www.hairrestorationnetwork.com/eve/179183-dr-dua-hope-revive...

This study states she held 85% of implanted hairs by the 6 year follow up

It's a PDF so google "transplante capilar en una paciente con alopecia fibrosante"

Comment by Annie on August 31, 2015 at 5:22pm

Ann Louise, I have also read that those who lose their eyebrows have less severe cases of FFA as well, but I wonder if anyone knows for sure.  I still have my eyebrows & eyelashes as well as the fine, colorless hairs on my face.  I don't think there's any underarm hair left, but it's really difficult to tell (I pass over  my underarms with my razor when I shave my legs just in case!)  I still have hair on my legs, but have lost most of the hair on both arms.

Comment by Maddy, California, U.S. on August 31, 2015 at 2:29pm

Kat - My FFA also started while I was on bio-identical hormones, and I also went through thinking that maybe it was caused by them. I talked to my doctor about it and called the company, but, as you said, there is no evidence this is the case. I have now been off of them for many years though. 

Anne Louise - I don't know where you live, but I live in the U.S. and my dermatologist writes me a prescription for Latisse (bimatoprost ophthalmic solution) and I order it from Canada. I've been doing this for several years and it works out great, and SO much less money. I use it at night on my lashes (still have good eyelashes, but they were really thinning before I started using Latisse), and  brows. Also, that study is interesting. the sides of my brows and eyelashes started going first...but I immediately started using Latisse. I still have body hair, although my arm hair is sparse...still have to shave my legs though.

As far as Rogaine, I have been using it for a couple of years now. I do remember some shedding early on, but then my hair started to thicken up. While hair did not grow back on the scarred areas, the hairs behind that has gotten thicker and helps to cover up the scarring. I use it every night around my hairline and back about 2" and on my brows. My brows are still in tact, although thinner than they used to be. 

Comment by Sad in chicago on August 31, 2015 at 10:45am

I did Rogaine and Propecia for a while, but gave it up.  Maybe it will help what is left, but certainly, nothing will help grow back what is lost.  I lost eyebrows, eyelashes are OK, and arm and leg hair gone, but I understand many post menopausal women lose arm and leg hair too.  This part I don't mind; facial hair gone as well---bleached and tweezed for years! face now smooth as a baby. Pubic and under arm skinny but definitely there.  Whatever.  All i care about is as I get older is I can get my topper on straight and there is enough hair to clip it to.  I still dye my hair and topper to match and thank goodness can afford all this upkeep.  One foot in front of the other!!!

Comment by Anne Louise on August 31, 2015 at 10:22am

I plan to give Rogaine a try this week. I bought it on sale a few months ago, but haven't been motivated to begin the regimen. The daily reminder of FFA certainly is not a joyful one! I have been off all treatments for many months, and with my bangs I can get through most days without giving it too much thought.

The last month or so I have noticed an increase in loss and thinning on top. Also, my eyelashes are thinning too. My question for you ladies here is how many have lost eyelashes? One article I read indicated about 3% of patients are impacted. I just pulled out my bottle of Latisse and am hoping it will help, but what an expense!

This study, which reviewed 355 cases, indicated that those who lost eyebrows first had more mild FFA. The more severe had body hair loss. I lost all eyebrow hair first but now have no hair on my arms or legs, so I wonder where that puts me?!

http://www.ncbi.nlm.nih.gov/pubmed/24508293

And lastly, Classical Anne I always enjoy your posts! You have such wisdom and compassion and I am grateful to have met you here. Perhaps someday we will meet in person! LSE I hope you take to heart the words of encouragement from all of us here. Don't lose hope.

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