Comment

Comment by Celia on November 15, 2014 at 3:17am

Ladies who have had eyebrow tattoos - don't forget to use a high SPF on them to help prevent fading !

Comment by MJ on November 14, 2014 at 6:49pm

I still have a little arm hair, but I have no idea how long ago most of it disappeared. I still have to shave my legs but the hair is definitely more sparse. Sparse in the bikini zone too. But, although my brows thinned, I did not lose them. I have read that eyebrows are 50/50 although I think most on this forum have lost them. It may be I caught my FFA early enough and got started with rogaine on my brows before they went....

Comment by Classical Anne in NC mountains on November 14, 2014 at 6:30pm

Linda, I just went back and read your interesting first post, in July 2013.  Sounds like you do have a very good medical team on your side.  Sorry for the stress and more recent depression you mentioned.  But glad that your latest post says that you're taking one day at a time and handling it.  There are quite a few of us here who would be interested in your derm's latest diagnosis.  It would seem that almost all of us have AA as well as FFA.  Which illustrates what a complicated and poorly understood condition this is.  The proof is here that eyebrow loss accompanies almost every diagnosis of FFA, and that arm and leg hair loss is common.  But I would hope we'd all be spared the emotional trauma of losing scattered patches of hair all over the scalp, as is common with AA.  I have started wearing a wig for certain occasions, because the quality and manageability of my remaining cranial hair is now low.  But I continue to be so grateful that a pretty scarf band still can cover the FFA loss on a daily basis, and gives my spirits a little boost.  Do please let us know if your derm provides further information regarding the eyebrow and limb hair loss.  Sharing thoughts with one another makes this website one of our chief forms of information and support, and I'm glad you're taking an active role in it!

Comment by Alice on November 14, 2014 at 2:45pm

Virginian, spironolactone was one of the first drugs my derm tried. I did grow hair, on the top of my head, while taking it, but could not continue because it made my BP too low. I've achieved about the same new hairgrowth using minoxidil and spearmint, either capsules or steeped tea. I actually have a few new hairs right at my front hairline, which I figure must be from dormant follicles that didn't scar over.

I agree that many derms may not be aware of the hairloss on arms and legs, in addition to brows and hairline, perhaps because patients aren't concerned so don't mention it.. I mentioned it to a derm who specializes in alopecia at a university, whom I saw for a second opinion, and she said it was "interesting". 

Comment by Classical Anne in NC mountains on November 14, 2014 at 11:30am

Virginian, it sounds like your experience with FFA is following the typical progression.  It may feel worse before it starts to get better.  But it does get better.  Your MD's right, the hair will not grow back in the areas where the follicles are already scarred.  But there are many ways to slow the progression, and always hope that it will simply burn itself out and be done with.  I suggest you read backwards on this site for a while, getting familiar with our various approaches and successes.  And do a word search [uppermost right of every page] for spironolactone in particular, to see other ladies' experiences with that drug.  In any case, your blood pressure medication absolutely must take precedence. 

Welcome to this helpful site, and best wishes for your success in dealing with FFA.

Jen S, thank you so much for your kind words.

Comment by Virginian on November 14, 2014 at 11:03am

Hi, all

I just got my diagnosis yesterday FFA. I first noticed hair loss in my eyebrows and about a year ago I noticed my hairline receding. I thought it might be a reaction to the blood pressure medicine I was on so I went to my doctor and we spent several months changing that medication. I recently noticed my hai loss was worsening and my scalp was itching so I went to my dermatologist. He took one look and said I frontal scerlosing slopecia. I now have to go back to doctor to change my BP medication again because the derm wants me to take spiranolactone which he told me was a diuretic but he thought it woul stop the inflammation but I would never get my hair back. I don't know what to think. Any suggestions?
Virginian

Comment by PamW San Diego, CA, USA on November 14, 2014 at 9:31am

I agree with Classical Anne. I raised my tattooed eye brow when I read Linda's comments. I am a big believer in second opinions.

Comment by Jen S. on November 14, 2014 at 7:32am

Classical Anne - I love your wisdom.  Thank you for sharing your words with us all.  Have a great weekend!

Comment by Classical Anne in NC mountains on November 14, 2014 at 12:42am

Linda, please forgive me for saying that perhaps your derm simply hasn't had much experience with FFA.  AA is a horse of a different color, and not likely to affect only eyebrows and body hair.  In fact it generally causes devastating hair loss in random patches throughout the scalp hair.  And I don't know anyone on this site whose eyebrows haven't been affected to some degree.  What's more, I think if you started a discussion thread asking about body hair, you'd find a great number of us who have experienced that loss on our arms and legs as well.  I think my eyebrows disappeared first, but I really didn't notice the loss on my arms until there was no hair left standing [obviously it was fairly light].  Perversely, the darker hair on my legs remains just patchy enough to require shaving.  I'd like to take that to the Complaints Dept!

I don't mean to criticize your derm for suggesting you have both FFA and AA.  I just think he isn't aware how common the brow and body hair loss is amongst us.  After all, every MD has to work with a first case of something now and then.  I actually was my derm's first FFA, though she has many patients with other forms of hair loss.  It was my dramatic loss of eyebrows that caused her to suggest a plug biopsy in the first place.  Since then she has researched it well and we discuss options at every appointment.  Actually, it may be an advantage to have an MD who is not yet very familiar with the syndrome, as he/she may be more proactive in searching out options.

Yours was absolutely right to stress taking good care of yourself.  I believe restorative sleep and a positive outlook are worth more than a pharmacy full of medications.  Particularly when paired with a good support system.  I'm speaking from too much experience.  I know you cannot just will yourself to sleep well and wake up feeling good -- it's just not that simple.  But with support from your family, and the compassion and information of the ladies on this site, I believe the day will come, perhaps a few months from now, when you suddenly realize you've gotten thru an entire day without thinking about FFA.  It's a rather cruel disease, and of course I wish it had never happened.  I have hated the days when it took such an effort just to look OK.  One curious side effect many of us have noted is that we cannot stop studying everyone else's brows and hair.  Eventually even that just gets funny when I think how many times Mama said, "Honey, don't stare -- it isn't good manners."

I hope that we can help you find the answers you need, as we boost one another's spirits.  Don't hesitate to air your worries here, and share your little successes as they come.   I truly believe you will begin to feel better about it all, day by day.

Comment by Sas Holland on November 13, 2014 at 7:02pm

Donelle, I don't have to wait because it is already very mild or little inflamation as the biopsy showed. So if I strat the Cyclo next week I can have the test stemcell transplant of 50 grafts  after 1 month. But I am still not sure wether to do this, since my hairline recession is not so bad yet, I can still hide it easily with my curly bangs. So I thought maybe I try this strict diet first for maybe 6 months or so (though I find it very strict and I hope I can stick to it, since I am very fond of sweets and red meat and whole grain bread). And when my hairline really starts to show then I can take the test tanasplant, because I hate to take such strong medicine as Cyclosporine A. But then again if I wait till it is really showing, then  I might be to late, beacause then I  have to wait 9 months after the test transplant and then I will need 3 times the normal transplant they told me, with each time 9 months in between. That is  if I want to restore my natural hairline completely from ear to ear.

LInda, I didn't know either that you can have both AA and FFA. I also have no hairs on my arms and upperlegs and my eyebrows were the first to dissapear completely.

I had them tattoed years ago for the first time., which is very satisfying. I am praying that my eyelashes don't start falling out though.

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