Classical Anne, I am so saddened to read of this genetic predisposition that has shown up in your daughter.  My sister is suffering from so many autoimmune problems, as is her daughter.  We have psoriatic arthritis in the family.  I also watch my daughters' hairlines, but I never say anything.  I know they are so worried that my fate will be theirs.  Thank you for telling us antigen marker.  I will ask my doctor about it.  Blessings to you and your daughter.  

Hi MnM. I have FFA as does my mum. There is 31 years between us in age but only about 2-3 years between the times we both showed symptoms of FFA x

Classical Anne I so sorry to hear your news of passing on the carrier gene to your daughter.  I can imagine that you feel guilty about it, but you know you had no control over that, right?  Think of what you have passed on to your daughter: a beautiful legacy of love and wisdom, patience and humor.  I admire how you face the world with optimism despite all of your ailments.  I am sure your daughter does too, and she is a better person for having you as her mother.  Sending big hugs to you!!!

Oh my goodness, Sally and Anne -- your comments are so sweet, and so very much appreciated.  Next time I get to see my far away daughter [the distance from the North Carolina mountains to Boston], I'm going to take a guarded good look at her hairline.  I don't want to worry her with that additional possibility.  But if there's any sign of alopecia, I want to help get her on the right track, right away.  Thank you all for your concern.  How lucky we all are to be part of such a caring forum of friends!

Classical Anne - thank you so much for passing on the info although I am saddened how you obtained it. My prayers are with your daughter. I also pray that your feelings of guilt are totally wiped away and that you realize in your heart these things are totally outside of your control.

As I read the comments here about genetic markers and hereditary FFA, I am reminded about something. When I visited my parents last year (before being Dx'ed with FFA), I had noticed that my father's hairline had receded a good 2-3 inches around the entire perimeter of his head since the last time I saw him several months earlier. I just chalked it up to age (he is 82) even tho it was apparent it was not the typical male-pattern baldness (he still has his very thick bushel of hair on the top). Now that I know about FFA, his hairloss certainly follows that pattern. Oddly enough, during the time I had noticed this hairloss, he was also battling a very severe case of the shingles.

I am now wondering if men are not getting diagnosed b/c they merely attribute the receding hair line as "normal". That would certainly kick the whole possible hormonal link for a loop (although with all the younger women being Dx'ed it seems to already be in question). 

Hello.  I agree that there are many factors, but most likely any kind of baldness running in families.  My Dad starting balding very early in life and although he still had hair around his ears, it started leaving from front top.  My mother, always had fine hair, and still to this day does not have ffa, but certainly you can see her whole scalp through!  Listen, I hope there is a cure and I do hope they find a way to alleviate, but in my mind it definitely is post menopausal and family genes plus bad luck.  When I wake up in the morning and see myself in the mirror I could die it is so bad looking.  I have lost about 2.5 inches from hairline and 1 inch or so back towards and around ears.  As I have done, get yourself a couple of clip in hairpieces, get them styled to your satisfaction and go for it.  What else are you going to do?  Try to be healthy and see the best in life.  There are good days and bad days, but other people are battling things that are way worse.  I can tell you this as a cancer survivor.  I did not need chemo so I never lost my hair before and this came out of the blue and is beyond a shock.  But I am here!  If, in fact, we pass this along, it is sad, but how about passing along a hideous, terminal disease?  Wouldn't that ber worse?  And, if I had known this might be coming, then I could have prepared for it better.  Think of it that way for others done the line who may experience this in the future.

I was doing some reading on autoimmunity this morning and came across this.  I find when I'm despairing of this bizarre disease I turn to scientific research to give me hope.  Wouldn't it be great to find a cure in the next few years and be able to keep my remaining hair?!  I can dream...

http://hms.harvard.edu/news/new-discovery-regulating-autoimmune-dis...

It's not just post-menopausal Sad in Chicago. This started in me in my early 30s and there are no indications that I'm in/approaching menopause. There are several young people on this forum. It may have started showing in post-menopausal women, but I think it's reach is growing. 

Anne Louise, that is the most encouraging thing I've read so far!  I went down a rabbit hole reading about NAD+.  

I think I might just try this stuff called Basis made by Elysium Health. (for some reason I can't get this to be a live link.)

 http://www.elysiumhealth.com/blog/the-key-components-of-basis-what-...

When there was some discussion of Vitamin A playing a role in FFA, (can't be too low, can't be too high) I asked my Dr. if I could be tested just because I was curious.  Just got the results back and I am low on Vitamin A.  Has anyone else had this tested?

Some good discussions!  Anne Louise, I really appreciate the hope contained in your NAD+ article. And kudos to LoriO for finding it in a supplement.  Sandy, you make an important point in distinguishing male/female "pattern baldness" from FFA -- if your Dad's new hair loss leaves a full head of hair at the crown and back, that does sound like FFA.  

For me, the problem with clip-in hairpieces is that I have both female pattern baldness as well as FFA.  I got a really pretty piece and was excited to have my stylist tailor it to my haircut.  But she was complete unable to attach it with its little comb-like clips to the top of my head because my hair there is now so thin it absolutely would not hold.  I now just use it occasionally by holding it [still rather loosely] with large barrettes and covering them with a wide headband or scarf band.  A lot of effort for minimal improvement.  Still, it's only hair [well, lack of] and I can certainly live with that.  And I am very pleased with 2 wigs I now wear to most outings.

I wanted to add to the HLA-B27 issue that I brought up.  My original diagnosing Rheumatologist, some 20+ years ago, put it in layman's terms for me.  He drew a little stick figure body and pointed out the areas where the linings of organs could deteriorate by autoimmune self-destruction.  At the time, I had only Fibromyalgia, and a problem with one shoulder which surgery corrected.  But I held on to his little drawing.  Since then, the linings of my bladder and my colon have been significantly damaged, and are chronically painful, though they are managed with exorbitant medications.  My other autoimmune issues are much less significant, and probably not an effect of the HLA-B27 syndrome.  But I'm wondering now if it might apply to FFA -- isn't the follicle sheath what is dying, causing the hair to fall out?  Might that be considered a "lining"?

Sorry my posts tend to be so long.  But isn't it nice to sort of think out loud [in print] among friends?

LoriO

I asked my derm about a month ago to have my vitamin A levels tested. My results were normal (0,5 micro grams/ml - normal for an adult woman is 0,35-0,75).
My ferritin levels were low, however, and I'm now taking medication to raise them.

Isabel, I had low ferritin too!  And low Zinc.  I had to correct those levels before my Dr. would refer me to the Dermatologist.  I've seen a few people on here who said they had low ferritin.  Mine was super low.

I'm new to this forum and wanted to share this interesting article pertaining to NAD+ that I came across while doing research. 

http://www.realnatural.org/probiotic-yeasts-stimulate-nad-increase-...

Be well, everyone!

MJ, my Ferritin was 6 a year ago.  It's taken a year to get it up to 64.  Haven't reached the magic 70 yet, where my hair will start growing back. (haha...that's all I thought it would take a year ago before my diagnosis.)

LoriO, How did you get your Fettitin back up?  My was at 7, then at 13.  I am taking an iron supplement, but It has not come up yet.  It has been low for at least three years.

Sallylwess, I just took iron supplements (65 mg) every day.  I also was low on Zinc and had to take that, as well as B-12.   I know that if you take zinc supplements too, it can cause your iron to come back up slowly.  Three years seems like a long time!

Wanted to report in that I have just finished a yeast cleanse and have gotten rid of every thing that even looked like it might have vitamin a in it.  My scalp is the best that it has been with just the tiniest two inches about three follicles deep that you can see any evidence of the LPP.  I have been using vinegar on that area and I have been using argon oil with lavender oil in it on all the area of hair loss.  I have no vein prominence - pretty much itch free - the pulsative tinutis that I seem to have on the side where it all started is also amazingly getting quiet.  I have not lost any hair since almost the beginning but I really believe that even though my body was obviously in auto immune land that the fact that I took vitamin b and milk thistle probably kept me from getting any more overloaded with A - I have not taken the time to look up all the shampoo and crème rinse that I have used over the last 7 or so years but I will bet that A will show up there as well.  I am appalled that there is not more interest in all of this - all of us seem really healthy - eat well - exercise - all different ages - there has to be some commonality!!!

Joy, that's so great to hear!  I'd like to know more about the yeast cleanse.  I, too, have eliminated everything I can find that has Vitamin A in it (especially retinyl palmitate and retinol), and the itching has subsided a lot.  No new hair growth, though, and it seems that the hair loss is continuing pretty rapidly.  I am just taking Doxycycline right now and I'm thinking about taking Plaquenil.  Are you taking that?  

Also, there IS interest in this -- you may know, but Dr. Elise Olsen at Duke is conducting a study right now, and there are 9 sites around the U.S. who are participating.  I met with her on Monday and she has put me in the study.  It's an information gathering study, no drug trials or anything like that.  I hope to have time this weekend to fill out the online questionnaire.  It sounds like it is quite in-depth.  I'll let everyone know what it's like when I finish it.  

And yes, it seems like most everyone who posts anything here has already been quite focused on heath - eating right, exercising, etc.  I am hoping that we can find the commonalities so we can put an end to FFA.  Dr. Olsen said that she thinks it must be something environmental - maybe something we are putting on our bodies.  I wonder about Vitamin A, and also about mineral makeup and sunscreen.  I thought about sunscreen because I read someplace that it seems to impact women of European descent - and I thought many of us may use sunscreens, including those in our day-time moisturizers and/or in our make-up. I've read a lot about nanoparticles in all this stuff, too.  I realize that I never gave any thought to anything I was using - just thought if they can sell it, it must be safe to use!  I don't feel that way, now!

I have stopped using sunscreen due to the metals that some think may have contributed to the LPP - had not considered mineral makeup and I do use that. I used the clobetasol for a while but it never did anything.  Initially when mine started I had a pneumonia injection and shingles injection  which really should not be given at one time and about a month later they gave me a shot for osteoporosis.  Prolia is known to cause problems with dermatitis. After all of that I was in auto immune land!  I refused to take the plaquenil as I was afraid that I would have some other bizarre reaction to it as well.  I really think that a liver cleanse would be worth trying or use the milk thistle as I think storing the A seems to make more sense than almost anything else.  The yeast cleanse made sense as well as I had all the medications and my doctors never suggested taking any probiotic.  As woman we love sugar - depressed we add a little wine and presto the yeast are multiplying. At this point I really was willing to try just about anything - I hope that you can get your hair to stop abandoning you.  I really do not know when I lost mine for sure as I never wear my hair up but I think that it happened pretty much in a 9 month max period of time.  I really believe the fact that I took the milk thistle was an accident that may have stopped my hair loss but obviously was not enough to stop the LPP.  It has markedly changed in the last four months since I stopped eating eggs and all the vitamin a in the face creams.  Let me know about the study at Duke - I would love to be part of it as long as they would not require that we take medication.  I had tried to find the info on line but never did. 

Hi all-haven't been on in awhile and I'm trying to play catch up on most of the comments-I do have a question -I have had an increase in scabs in my scalp as if they just happen, I don't itch or rub hard, use organic products for hair color but it continues.  Has this happened to others and has cellcept worked to diminish symptoms??  My derm wanted me to start the drug 3 months ago but the side effects didn't seem worth it--thoughts are appreciated .  Thanks!!

I'm curious... I see a lot of ladies here getting tested for ferritin.  My doc normally tests for Serum Iron.   Isn't Serum Iron testing enough to determine an iron imbalance in the body?

Did anyone see ITV this morning with Lorraine? The lady chef talked about her hair loss and wigs. It sounded like she might have the same type of hair loss to us as she said hers will probably never grow back and also the damaged hair grew in zig zags. It would be interesting if she does have the same hair loss, we could do with a well known face to fight our cause

Hi all, It seems that lots of you have had biopsies and try various treatments but so far I haven't seen that there's any real success stories. So, what's the point of even bothering with a diagnosis, or biopsy. OK, if we can figure out what causes it maybe we can figure out a way to stop or, better still, reverse it. I'm not convinced that there's any advantage to chasing after doctors or treatments when there just aren't any results worth talking about. Can anyone give me any reason to try any treatment or even get a diagnosis?

Hi Maz,

I know what you mean. I am glad that I did the biopsy though, because as Lauren says, it could have been something else which maybe is treatable.

My FFA was very little active at that time and that's why I decided not to take any treatment at all (biopsy was over a year ago). I have not taken any pills or used creams or got injected at all and my loss is still the same as last year. It has helped me a lot not to think so much about it. in the first months I couldn't  stop browsing the internet for info and wigs etc and it made me very stressed. I just started to do meditation and affirmations and that helped me being less stressful about it. I don't know whether my FFA has burned out (hope so!!) or it just moves very very slowly. (It started about 11 years ago with my eyebrows slowly falling out, but I never had noticed my hairline until a doctor  last year (who I consulted for my eyebrows) noticed it. I just wish we know what starts this FFA!

Hey there Maz,

I absolutely appreciate where you're coming from.  So few people seem to have positive results with the current treatments, or they aren't posting if they do. Maybe we should start a "Share your successes" discussion thread to compile this information in one place?  Is it futile to try the various treatments?  Maybe, but I'll keep going until I've exhausted all the treatments out there. It does seem to me that my case is more aggressive than others here.  I'm going through a big shed right now where I fill up hair brushes and my hair falls continually -  this has been going on since mid-September and I've lost another 1/3rd of my hair.  I don't hear stories like this from others on this board.  I also am in agreement with other posters about a biopsy.  What if it's treatable/curable?  Knowing exactly what I had was important to me. 

Yes SJC I would like to hear of any success stories. Many of you imply that some types of alopecia can be treated but I haven't been convinced. The treatments seem to be like face creams (designed to make the sellers lots of money by selling hope but delivering very little that the cheapest moisturizer couldn't do). I'm really hoping that someone proves me wrong.

Steph: Regarding whether I've been told it's due to an over-active immune system... A dermatologist and her assistant both said I have FFA, and they explained that it's an autoimmune condition/disease. So, yes,it's tied to the immune system. As for itching, I don't know. I have been assuming that itching is a BAD sign? I haven't had a ton of itching at all, however lately it's been itching and, along with that, some days I see the slick line at the front hair line (back again) and the weird, aging type of skin on the upper portion of the forehead (on and off). So, I was assuming that this itching sensation, combined with these other bad visible signs, means it's acting up again. But I don't know. No big movement yet on the hair (that is combined with this itching), though I seem to be shedding all over now, more than usual. But still, I remain mostly concerned about the front. ... As for whether to pursue treatments, sorry to say it seems like a coin toss? From what I've read, trying to find scientific type studies about FFA, it seems that they've seen some women respond to treatments, but in each case they say they do not know if they would have responded even WITHOUT the treatment. The only little anecdotal story I heard which sounded interesting was when the dermatologists' assistant told me that one patient who lost 5 inches from the front to back has regained 1 inch of hair using the shots. ...I personally, however, have chosen NOT to take any pills or anymore shots (had one round), and I am not using the foam/topical steroid, either, (put it on about 3 separate weeks worth) since if it gets better, or worse, there's no proof that NO treatment will be the cause of that, either. From what I've read (it's all very confusing) it seems that you should definitely avoid the internal/pill form of steroid, though the topical stuff maybe could not hurt to try. And in fact it's supposed to help in some people, according to my dermatologist... I've read it can CAUSE inflammation, though I'm sure in some instances it can help, and my dermatologist said that is NOT possible. So, take what I "read" with a grain of salt, I suppose.  I wish we had answers. Maybe some day...

Has anyone looked at if/how Mast Cells may be related to scarring alopecia.  http://www.aaaai.org/conditions-and-treatments/related-conditions/s...           http://www.hairlosstalk.com/interact/showthread.php/35425-More-on-m...

I haven't been on here in a long time.  Thought the FFA had burned itself out.  Had to stop plaquenil that i'd been on for lupus since 2011, plus a major stress in my life and I've now lost another half inch all around my face.  Can't hide it anymore. I have to decide on a wig or topper or just shave my head.  I've tried just about every diet, cream, foam, injection, etc.  Acceptance is all that's left.

Hello all-  I am curious about the use of Latisse to grow eyebrows back. After 4 weeks of topical steroid spray, this is the recommendation of my dermatologist to get hair back.  Has anyone had any success with this product?

I have been using Latisse on my eyebrows and eyelashes for years (basically since I first started noticing loss) and it works for me. I get a prescription from my dermatologist and order it from Canada (generic Bimatoprost) and I am almost positive that this has saved my eyebrows.

Thank you, Maddy : )  That makes me feel better again gaining hair back...Latisse is so expensive, so I am just curious if it were written as a prescription here, would my insurance cover it ?  I am writing down the generic name to help.  Much appreciated!

Most insurance plans in the U.S. (not sure where you are located) won't cover it unless you are diagnosed with glaucoma (the original intent of this medicine). I always ask my derm for a 1 year prescription (12 bottles) and then I order them through a Canadian pharmacy in 3 bottle increments. Three bottles cost a little less than $60...which lasts me for at least 3 months. This is the pharmacy I use and they have always been reliable.  http://www.bigmountaindrugs.com/   Also, I order Bimatoprost [Generic version of Lumigan] .03% 3 ml. bottles (Lumigan is the same as Latisse here in the US). 

I already have lost my eyebrows.  Do you think the Latisse will work to bring them back?

My dermatologist tells me that Latisse will grow here on 'anything'.....but that is not always the case, from what I have read here.  Some cannot use it at all because it is very irritating to the skin, or can be.  It is also expensive.  However, it is worth a shot I think for anyone who wants to try it for eyebrows or lashes .