Hi everyone,

I have just uploaded more pictures, because  I think everybody is curious how FFA shows in others (well I am;). But sadly enough there are not many pictures here, so I hope more people will follow,

After my FFA diagnoses last sept 2014 (that showed very little activity) I have not taken any medication or treatment since then. I tried the auto immune diet, but that was very hard and since I don't feel or see any symptoms (like redness, tenderness, itching) I could not see any progress, so I stopped the diet. I only try to reduce stress by Zen meditation 2 a day 20 minutes. This works really well, because now I don't think of my FFA all day long any more.

My FFA seems to be not active at all, that's the reason I am not taking any medication or treatment. But when it does get active again, I might try treatment though.  I have never noticed my hairline receding in the 10 years before, or felt anything. Perhaps I did not see it because I always had curly bangs. But perhaps my hairline is still receding but so slowly I cannot feel or see it?   it started with my eyebrows disappearing in 2004 and I did not think of an illness at that time, because I never had much eyebrow hair. I just had them tattooed, which worked perfectly for me. I have lost all hair on my arms and upper legs as well. I never had much hair there also. I had not noticed that either until the doctors showed me last sept.

PS: Hairsuper's comment seems like an add to me?? I did not see any wigs on that site, just extensions

Mel, Yes, I had problems with clobetesol.  It irritated my scalp very badly.  It even irritated my hands and I was applying it with gloves to my scalp because of the hand irritation.  Finally, when my scalp kept getting worse, I told my doctor what was going on.  He said that it must be the clobetesol and he prescribed another drug called "DermaSmooth."  It made me break out in a rash.  I also developed a rash on my face and neck the day after my third series of Kenalog shots.  So, I know these are anti-inflammatory drugs, but they can cause problems. I took pictures to show my doctor so he would see what happened.  As a side note:  I saw the dermatologist yesterday.  I am not over this by any means, but my scalp looks better with no drugs than it did when I was treating the disease.  

Morning ladies. I hope everyone is well. Just a reminder to anyone new or who doesn't know, if you post a picture on this site it will then show up on a Google image search for FFA. Some of us have found this out the hard way, including myself. So, unless you want your photographs shared with the world please email them privately to each other.

oh really Liz, thanks for telling me, I did not know that! Thanks for telling me I will remove the pictures that show my FFA  off this site!

Mel, I also had extreme scalp tenderness while using Clobetesol, but I think it helped to keep my inflammation under control.  I could tell a huge difference when my doctor took me off from it for a few months.  I now use a different topical called Betamethasone (much more expensive!), which also causes tenderness to a lesser extent.  I think I'm just sensitive to the topical steroids.  

I'm really interested in the comments about omeprazole since I've been taking it for years and have FFA.  I checked online for side effects and alopecia is listed as a rare side effect of the drug.  I'm gradually decreasing the dose, starting with one capsule every other day, because I've read you can experience a rebound of acid reflux otherwise.  I'm replacing the omeprazole with famotidine, which is supposed to be safer.  Also, someone mentioned they are from Portland, OR and I'm wondering if you are seeing Dr Roberts/Desai as I am. Dr Desai said there might be some interest in a support group among her Portland patients but neither of us followed up.  I think the Portland FFA member mentioned some success with finesteride--I'd like to try the finesteride again but it made me depressed when I first tried it.  Right now I'm doing the injections, doxycycline, and plaquinil and hair loss is minimal.  I'm seeing some regrowth of eyebrows using rogaine once a day, even though the doctor said it wouldn't help.  Thanks to all of you brave contributors to this forum; it is really helpful for technical info and moral support!

Rachel, I do not use Rogaine on my scalp -- only on my brows, where it definitely has helped some.  But I understand from several sources that the scalp hair shedding with Rogaine is a natural part of the progress.  Others have said that they then saw much improvement.  You might want to start a new question thread about it.

Best wishes,

Anne

Anyone feel the injections made hair loss worse? I only had one round, but in the past 1.5months, my temple is a lot thinner. Could be this action was already set in course or the injections accelerated it, my hairloss had not been rapid before.

Yes, but my derm has been happy to supply me with samples that have lasted 18 months now, though I only use it on my eyebrows.  Ask your MD for samples, it's an outrageously expensive Rx

Hi Ladies

So I first noticed my hair loss last June and since then i has lost 80% if my hair, lashes and eyebrows also badly effected. I searched for so long to find answers - not my thyroid, not anaemia, not coeliac...I had a derm tell me twice that it was telogen effluvium. She did a scalp biospy and said "9% of your hair is in telogen, no scarring, no miniaturisation". I later found out that she took these biopsies from the frontal and occipital areas. Not ideal. I went to a trichologist who looked at my hair and scalp microscopically and said "80% of you hair is either miniturized or not growing properly". I was put into spironolactone. I have also recently found out that my DHEAS is elevated, whilst my estrogen is at a menopausal level. Makes sense since i had amenorrhea for years and only this Jan started getting regular periods again (lord knows why). However my estrodiol is still terribly low. My gyno says i may have tube issues or going into premature ovarian failure. We are in the midst of doing further tests to find out.

Getting to the point, all of this confusion has been surrounding the pattern of my hairloss. For the longest time no doctor has been able to tell me why my temples, sides, hairline and nape have been so badly effected. No one could tell me why my lashes and brows are thinning terribly. Everyone says "your hairline looks normal. Women usually have wispy vellus hairs around the hairline anyway". But looking at photos and seeing the change happen to quickly now i KNOW it's happening and i now have bald spots on my top hairline, the hair around my temples is so thin you can very very easily see my scalp and my nape is kreeping up so quickly that i feel like soon i will look like a bloody monk. My eyebrows seem to be thinning from either end also. My scalp itches and i notice it gets red too. At times my eyelids become tender and i have noticed my bottom eyelids becoming kind of droopy. I look awful.

I am 22 years old.

After hours and hours of research and agony, wondering why my AGA doesn't look like AGA, i came across FFA. It all fits, and i cannot breathe. It explains the very gradual hairline recession, the eyebrows and eyelash loss, why there is literally no regrowth on the recession where the hair has been lost. I believe that i have both AGA and FFA. This is common apparently in women who have FFA. I told my dad who is a doctor and he said with much concern "certainly, this is something we must at least rule out". I can tell me seemed convinced too. I now have an appointment to see another derm in 2 weeks, and in the meantime i am slowly dying inside. I am young, and i may just... lose all the hair on my head. It's bad enough that i have been told that i may never have children. I do not notice and white shiny where the recession is but apparently this isn't always noticable. I mostly notice itching especially at my nape and tender eyelids. There appear to be no pimply/lesion things. I really would like opinons. I am almost totally certain that this is what i have as it fits too well. However any input would be appreciated. I shall attach some photos. Please not that i am wearing makeuop so you can't tell what my lashes and brows look like. I shall also include some "before" photos as a comparison

Thank you

I agree with Donna.  I would die for photos and hair like yours.  Enjoy what you have, take wonderful care of your hair and yourself and you will see that it may not become as much an issue as others have experienced, such as myself.  I will say that post menopause seems to be the timeline in which the condition worsens, and you are far from that.  Right now i cannot go anywhere without a piece and the summer is troublesome too, but I know that when I am wearing something I feel better and someday you will too.  As one of my friends keeps saying to me, "nobody got really sick, nobody died."  Very true.  Just a pain in the ass to deal with as you get older.

Sad in chicago, Donna, I really appreciate your kindness. Issue is i feel like this has happened so fast. Seems like i look back at photos from the beginning on 2014, i noticed that i began to recede then, then all of a sudden by june i had lost a vast amount of hair all over. My nape began to creep up... now by the same time a year later it is just out of control. It's receding to fast now that i can see the changes each day. I wake up and i feel the cold on my nape where it had not been like that before. I have lost whole rows of lashes, my brows are receding from both ends and and look patchy in the middle now. I can even see patches of no growth on my arms. And it seems like it just sped up so fast all of a sudden. I do have the hormones of a menopausal women although i have (weird irregular) periods. It has gotten to the point where i will not leave the house. I just cry. I think about how i will end my life.

I am confused about a couple of things though. I notice around my hairline that i have tiny little vellus blonde hairs where the hairline was. I was under the impression that FFA mostly effected vellus and intermediate hairs (hence the hairline, brows, lashes etc). So would that mean that all other downy hair on the face would be effected? Like the little peach fuzz that everyone has? Mind you my peach fuzz is a little longer because i have like zero estrogen. I am 99.99% sure that i have this thing. It fits too well. I mean, my WHOLE hair is terribly terribly thin and my crown is very bad, but i chalk that up to AGA. It's the temples, nape and hairline, brows, lashes and now arms that has me convinced. I look disgusting. I try to pull bits of hair out around my face to make it look like the hairline isn't so far back but i am rapidly running out of hair in order to do this. Ontop of this i have terribly acne and oily skin. Even on my chest and neck. I know i shoulod be grateful that i still have hair, but i just feel like i am only waiting around for it to get much much worse. This in itself is agony. I am 22. I will never have a relationship. Who wants a girl who cannot have children and is totally bald on her head? There is a boy who i was falling seriously inlove with.. but i have just stopped talking to him. I won't see him. I can't bare it. He will not want me anymore. All he liked me for was my body. Well, i can't even offer that now. 

I don't want to do this. 
I can't. 
I feel like i an suffocating. 

Maybe this will show you... :( The temples and nape are no bad. I have a bald spot on the fight hand top side of my hairline. And it seems like everyting on the right side is effected slightly worse. 

Hey LittleSadEyes, I'm sorry you're going through this.  I've had a tough time coming to terms with my FFA and I'm in my 50s.  With all your symptoms, have you been checked for PCOS?  You have all the symptoms and I think if you get it under control your hair will grow back (unlike with true FFA, which is scarring).  I'm not a doctor, but I would think this would be something to investigate.

That said, if it is something more permanent, you have beautiful features and would look good no mater what your hair looked like.  And no man worth having would ever base his feelings for you on what your hair or body looked like.  It is worth waiting for that guy.  Meanwhile, love yourself, and talk to yourself as if you were talking to your best friend going through all this.   

LittleSad Eyes:  My derm told me nothing works.  I tried cortizone in my eyebrows, to no avail, and ouch that hurts!  We would take some malaria medicine, but I would never do that!  I tried Rogaine and propecia, to no avail.  I have since seen a derm who specializes in hair restoration and transplants.  He is not sure it would work with this condition, so has offered to do a "test" strip.  However, the expense of the operating room, staff, etc. is not discounted for the test, so not sure I can afford it -- especially if it does not work!!!!!  Thinking about it and perhaps doing more research.  And yes, all the fuzz, moustache, stuff around ears, etc. -- gone.  No more messing around with bleaching, tweezing, snipping, etc.  That's the good news.  Legs and arms too.  Smooth face, neck and body like a baby.

I want to provide a more robust/heartfelt answer when I have more time, but did want to mention that my doctor thinks slowing down the progression is very possible, and I have faith in her. I haven't really noticed much loss in the past 10 months. One thing I find with this is that if I shed, my knee-jerk reaction is to think "Oh no, my FFA is flaring!" but then I remember that I've ALWAYS shed more in the summer. I also do not wash my hair every day, so when I do wash, it's two days worth of shedding. I have been on minocycline since October - first twice a day for three months, then once a day for three months, now I'm on every other. I go back in August for a check up, and the goal is to take me off it. My heart has gone out to you, LittleSadEyes, with every post I've read, as I know how scary this can be. I'm at work and in a rush but wanted to weigh in that my doctor thinks slowing the progression is very possible, especially if you are "young" for this condition (and you're obviously so young for this if I am "young" for this at 36 when I was diagnosed!)

Sad in Chicago - what doctor do you see?

Bonnie Barsky is my primary derm

Thanks for posting those articles LittleSadEyes.  Very interesting.  I think laser treatment maybe helpful in some cases if the treatment occurs early enough - prior to the scarring.  Has anyone tried it?

Donna, i am happy to be a guinea pig haha. I still have relatively recent hairloss so perhaps i am a good candidate. Bit expensive though!

LittleSadEyes I am sorry for your suffering.  Your anguish is palpable, and something I'm sure most of us can relate to.  But you are so young!  I wonder if you may be the youngest documented case.  With your estrogen levels and hormonal problems, in my opinion there must be a link between hormones and FFA.

Thanks for posting those articles.  The first one referred to FFA as a varient of AA, soemthing I have never read before.  AA is not scarring and the hair can grow back.  That was not a medical journal, so perhaps there is some misinformation.  However my derm seems to think there is an AA component to this since we lose body hair too.  My understanding has been that FFA is a variation of LPP, as the biopsy results show elevated lymphocytes (a type of white blood cell).

At the last CARF meeting I went to back in January, two women were talking about laser therapy.  They bought their own machine and split the cost; they seemed to be having some success, but it was too soon to tell.  I was dealing with other stuff at the time and didn't have a chance to speak to them afterwards, but perhaps this is something some here can pursue.

Not having a good day at all. I have so much shedding from the spironolactone and i have just recommenced treatment using minoxidil 5% and i know that a massive massive shed is imminent. I haven't got any hair to lose. I will literally go bald. I feel really really deflated and hopeless. I just want it to end.

Blondie - I was wondering if the hair loss is still stable.  I see your post from May of this year that said it had stopped... and was hoping that was still the case.  I'm also interested in your short pixie cut... and if that style still allows you to conceal the loss.  Many thanks... hope all is well.  If you can provide an update, I'd love to hear!

Does anyone know if hair restoration (transplant process) actually works for Alopecia or even more to the point, FFA?  The skin and scalp where my hair loss are is smooth as can be....no follicles left, no apparent scarring, etc.  I found someone who thinks it might work and can do a "test" run, but it seems to me there would be someone somewhere who already had a "test" and can offer support and be a resource.  thoughts?

I read a research article on Hair transplant and FFA. A major portion of the hair fell out within one year and all of the transplant was gone within three years. The same process that attacked the old follicles just start in on the transplanted ones. Even if it is dormant, I think it would go if there was a reoccurrence. Given this information I quickly decided hair transplant is not a viable option. I feel the major expense would be wasted. Sorry it was not better news.

Nancy

Interesting.  My thoughts were it might not work in the first place, but I didn't think it through to where it could happen AGAIN.  Makes sense, but so frustrating.  I have been dealing with this for three years now and I cannot get past my sadness, discomfort and anger.  I have good days where my hairpiece looks and feels OK so I do too, and then days where I cannot even look in the mirror.  

Thanks for passing along your research.

Hi Littlesadeyes, My heart goes out for you too, you are so young.

I hope my story helps you a little bit with hope;

my FFA looks like it has burned out ( for now or for ever, who knows?) because I don't see or feel anything happening. I am not using or have used any medication or medical treatment.  When I found out that I had FFA (last sept.) it already was very little active as my biopsy showed. I did try the AutoImmune Protocol  (A.I.P.) diet and after that the IgG blood testing diet, but I could not notice anything in my body and since I already had no symptoms like itching, redness, flaking, tenderness or visible hairloss I stopped those diets because I found them hard to follow..

So  FFA can stop or slow down just by itself I think.

The only thing I did  and still do and in which I really believe that it helps,

 I started Zen meditation twice a day 20 minutes to reduce the stress (for the first couple of months I could not think of anything else than my FFA and worry how far it would go) This has helped me very much, because now I don't think about my FFA much.

I strongly believe the  heavy stress I had about 10 years ago caused my FFA. And I really believe that trying to reduce stress and deal with things that happened in the passed that causes stress will help.

I also don't use shampoo and styling products  with sulphates, parabenes and  silicones any more (it is called the Curly Girl method), but I started that  already about a year ago before I found out I had FFA. My hair looks much more healthy.

I really hope yours will burn out too and I wish you al the best,

love

Sas

i'm new to the group, so I just got an email about a message from Mildred about a Duke study.  That is within driving distance for me, soId like more info.  Anybody know about it?

when frustration strikes and you don't care anymore 

LittleSadEyes - that haircut is fierce as heck! You look amazing, like you're on the pages of a high-fashion magazine!

Have you received results from your biopsy?