Christi Q Yes I have used it & still am since October.  After 6-7 weeks I stopped losing hair .  Went to the derm & she was pleased, I am now down to using 3 times a week until I see her again in May.  I originally posted a more detailed message but it wouldn’t post for some reason.

Christi Q.,, my derm suggested I use Rogaine on my eyebrows. She suggested to use a q-tip but I just dab it on with my finger. I think it works OK. I still have eyebrows not like I used to but I get by. I don't use Clobetabsol I am on Tacrolimus ointment 0.1 percent. 

I’ve been using a new hair product  that I like a lot. It’s Living Proof, PHD (Perfect Hair Day) 5 in 1 Styling Treatment. It saves me from having to use conditioner in the shower, it detangler and gives a bit of volume too-especially to the bad hair that is like straw on the ends. 

My wee pixie just needs a tiny pea sized amount before I blow dry my hair. Just thought I’d share! :)

I just looked at the nape of my neck. Yikes. My hair line is probably one to two inches higher than it should be. I wear my hair longer so it is disguised. But, has anyone discovered how they can stop this? Derm costs a fortune. I wear headbands to hide the loss on the sides of my head and forehead now. 

Isn't a dermatologist covered by insurance??? I haven't lived in the States for 20 years, I hate to give you insurance-envy, but that's one worry I really don't miss. 

Anonymous, I am losing hair at my nape too. It also feels like other parts of my scalp are sore - even on top. I'm going to see new Dr. Famous-Man dermatologist on March 8th, so we shall see. I have Abandoned Hope in terms of medicines, or whatever they throw at me, though I'm still willing to be a relatively good sport and try things for a bit. 

Since my official diagnosis last June/July, and beginning treatment with minoxidil and cortisone, I have lost more hair, and now it's the nape too. I feel like they are throwing things at us "for hair" but they really have no idea how to treat this specific problem. I also take iron. And other stuff, vitamin D, etc. Again I feel like they just throw whatever at me and say "hey, see if this does something." So, I do. And it doesn't. 

These days I'm just like "Fine you stupid FFA, just keep FFA-ing with my hair, since that's what you are going to do anyway." It's like trying to deal with my cats/husband/teenage sons... so the solution for me is Accept and Adapt. 

These days I am into oils. I walk around quite greasy-headed (in the HOUSE) and think positive thoughts. So far my hair hasn't caught on fire. 

My foot injury (planar fasciitis) is more upsetting to me right now than my hair - no dancing : (, no hiking : (((, never mind jogging etc. 

How does one deal with anything if you must sit still? Not my thing, sitting still. 

Anonymous, Halfbakedwho-I discovered the same loss at the nape of my neck too. It's been itchy there so I knew something was up. Mine is higher and thin but I also have patches of hair loss there as well?? Is that FFA or is something else going on? it's also come in on both sides of my neck there. Now the skin there is white and smooth.  Ugh. .I am a pony tail girl so this makes me so sad.

Do you have "diffuse thinning" all over as well? When I looked at the back of my head my hair there is so thin that I can see my scalp. Someone called it "doll hair" awhile back. The texture and weight of my hair is so different that it feels so strange on my head. Should we be using minoxidil there? Or as so many of us have said Does anything we do really matter or will it just keep creeping along destroying everything in it's path. .not sure what the point of seeing my current dermatologist is anyway? it's embarrassing to have her inspect my head with a magnifying glass only to tell me there's nothing I can do. 

One positive note- I have been using a product by Just Natural Hair care that I like (Adult Women's Hair Loss Treatment). They have a lot of products that use natural oils. Messy and but I like it.

I've also been using Bumble and Bumble Thickening Dry Spun Finish spray for those flat hair days. And I love a product by Billion Dollar Brows. Its a brow powder but I also us it for the patches of loss in front of my ears. Just to darken it a little there so it's not so noticeable. I've also used it along my hairline and it seems to stay on for a good part of the day.

Thank you illustr8r. I will give Living Proof PHD a try.  

Just another Sunday dealing with all of this. Time to enjoy my day. Thank you all for being there!

I have some thinning on top, no temple hair, lots of hair in the back, with the high nape line. I am writing down every suggestion given for hair products and otc products. I've seen derms and endos., and paid a fortune. No, my insurance doesn't cover, and they didn't seem to have any solutions. My endo. said there isn't  a lot done with women's hair loss. I may try again, but I want to cover all the bases I can. I am grateful I found this group. No one I know seems to have this problem. I'm trying to tell myself, it's just hair, but I'd really like it to stop.  

Also lost my eyebrows. This happened at menopause, so it must be hormone and thyroid related  Dr. told me I was getting old. Last time I saw her. Took the autoimmune tests on my own through independent lab, and tested high. 

@Anon I got the “as we age” speech more times than I can count. Although I like my dr it’s beyond frustrating that they don’t hear you when you are shouting, “this isn’t normal!!!”

I got the 'most women's hair and eyebrows thin as they get older' line' after about $7,000 worth of blood tests, $160 worth of various creams , 2 dermatologists and an endocrinologist. Well my mom had thick gorgeous brows til the day she died so I was skeptical. Did some research of my own online and when I typed in "women's hair loss associated with age", BAM! Up came FFA. I knew this was what I had. Went to derm #3 and told her this is what I think I have And handed  her some print outs. She did a biopsy and confirmed it. (Thank you Dr. Me.)

at Anonymous....I too have thinning on top. Dr. Hair Specialist in Philadelphia (4th dermatologist that #3 sent me to) said it was FFA with female pattern balding. What the hell?? He offered no help except to continue  plaquinil and avoid sunscreen.

At Halfbaked...yes, dermatologist visits are covered by insurance but depending on the type of plan you have there might be significant co-pay up to a specific dollar amount.

sigh......my scalp hurts just thinking and talking about all this!

Beez is correct. My high deductible plan is so high, I forget that derm would be covered if I just spent enough money. Sigh.

@Beez I have a photo of my 94 year old Grandma with her thick head of hair and full eyebrows. Alternatively, I have baby pictures of myself at 2 years old and it appears that I am reverting to the hair I had then...although 2 year old me still had more eyebrows than I do now. $&##?!#%!!!

Hi all, 

apologies for going over old ground but just wonder if I’m missing anything...& I’m desperate.  My scalp has been inflamed and ‘spongy’ in parts with some scaling and of course obvious hair loss since August.  I sporadically use cocois, dermovate daily (4 months) and hydroxychloroquine daily (3 months) to no avail.  Is there anything else I can do?????   My scalp is so sore and I feel helpless.  Can LPP/FFA be so significantly active with such rapid progression for this period of time? How long will it continue for?  I’d hate to think I should be doing something else other than just watch my hair disappear  rapidly.  

I feel I’ve aged 10 years in 6 months :-( 

Afraid don't apologize. I have had spongy scalp too - it comes and goes on the top - and where I've lost my hair it's numb. Do you have access to a good specialist near you (or not too far) who understands FFA? I myself go to Paris (I live about 2 hours from Paris) where there are several specialists. Otherwise maybe you could ask the people on the CARF site - the doctors responsible there I mean- for a telephone consult? Just throwing ideas out. Otherwise, I have found it helpful to project myself into future hairpiece and wig-land. I found it really comforting to finally meet a wig-person who wasn't fased nor freaked-out by my weird hairless pattern. 

If you are feeling seriously depressed/anxious - then see someone for that too. I am a psychologist/psychotherapist myself, and I get a LOT of personal therapy too (otherwise I couldn't do my job). Sometimes I need medicine (antidepressants) when things are hard. There is NOTHING wrong with this. Feel free to message me if you'd like. 

Gros bisous as we say here (big kisses on the cheeks).

 To all of my FFA sisters, today is world rare disease awareness day. I have worn a blue ribbon for all of us who suffer with scarring alopecia. It is a strange thing that we deal with and I salute all of you brave sisters. I want you to know that you are beautiful in every way. I appreciate each one of you for sharing your anguished, fearful, frustrated, beautiful self with this community for I have been greatly encouraged through you and your stories. Hugs to all!

Hi, I wanted to thank you for accepting me as a member. I suffered from rosacea and melasmas, used a lot of sublockers on my face following the dermatologist suggestion, I also have Celiac disease and Hashimoto. I have the HLA DQB1*03 gene associated with LPP; 2 days ago I received my biopsy results, LPP FFA. I was prescribed with Plaquenil which I refused because of the risk of serious eye damage, so I'm left with no therapy. Now I will try the IAT therapy suggestion: NAC+L-tyrosine+vitamin D3. Has anyone tried it maybe? I'm not use coconut oil + tea tree oil for the itching and it helps. What do you use to stop the itching?I wonder whether there is and underlying fungi or bacterial or viral infection behind FFA, or their combination. 

Hi Pascal, are you in France maybe? One of my sons is named Pascal. It seems that you have more than just LPP FFA. So far I'm just on the regular Clobéstasol and Minoxidil. I had been going to the Clinique Saubouraud in Paris, but their hours are so complicated that I'm seeing Pierre Bouhanna next week. He has written some alopecia books, so we shall see. Thank you for the heads-up CurlyK, I didn't know that it was rare disease awareness day. 

Am going to get my hair highlighted - it's always a bit intense dealing with a new hairdresser. Since I've just moved, I've been changing people. I tell them I'm an alopecia sufferer... they say... "ohhh". Whatever that means ; )

Hello all- The itching and awful scalp sensations are terrible for me right now. And I'm really noticing it on the areas of my body where I'm losing hair. Even around my eyes. I know some have mentioned tea tree oil? Or coconut oil? I would love to hear your thoughts. 

Very hard to move forward with my life when this itching is driving me crazy everyday. 

@AnnieMay Have you ever had your B12 levels checked? During my last big flare my family dr. checked lots of things and one of them was B12, if you are low, it contributes to itchiness and hair loss. I had 2 rounds of B12 shots and now I take 500mg of B12 daily. It helped a lot-I’m only itchy now if I overdue it with gluten/sugar/dairy.

One option to ease itchiness is to take a Benadryl or Zyrtec.

Castor oil helps control flakiness for me and soothes the weird tight feeling scalp. Others use other oils for relief too. :)

Hugs to you. I know this mess is a daily battle.

Thank you Halfbakedwho for your answer and great infos, the dermatologist also suggested Minoxidil and added I will have to use it for the rest of my life...implying that the ithcing will never stop which is so terrifying...sometimes it's unbearable and I can hardly function normally. I also have itchy lower legs but the doctors assume it's because of celiac disease. Halfbakedwho I'm from Croatia, Zagreb, and here it's very hard for me to find a good or better any trichologist at all. AnnieMay I understand you completely. My formula is virgin cold pressed coconut oil and tea tree oil. I put a tablespoon of coconut oil in a plastic bottle, let it warm up and become liquid then I add 7-10 drops of tea tree oil and I massage it onmy scalp. I let it sit for half an hour and wash away. The first time I did it with only coconut oil and it helped the same. I add tea tree because I feel it cleanses the scalp surface better. Also I've read about taking coconut oil internally and I will try it too, and coconut oil pulling which I began two days ago. Today I applied coconut oil on my lower legs and the itching stopped. I hope it will help you too. Another thing I'm into right now is fasting. It seems it's very good for autoimmune diseases. 

Thank you both! Off to the store for castor oil, tea tree oil, coconut oil. . .I'll talk to my dr about B12. is there a shampoo you like? the texture of my hair is so weird now (kind of like fine cotton candy?) and I hate it. Do you use a conditioner?

@AnnieMay I use Loma Daily Shampoo (it’s for fine hair) and Living Proof, PHD (Perfect Hair Day) 5 in 1 Styling Treatment. I can skip conditioner in the shower and it beefs up my hair a bit and gives it a nice shine.

I also read about oral lichen planus sufferers who found coconut oil extremly helpful so it might really be that coconut oil is really effective for all of us. I use Yves Rocher anti-recurrence dandruff shampoo frompomegranate peel, and no conditioner. I also found that vitamin D3 plays a huge role in our disease, and IAT suggested the combination of NAC+L-tyrosine and vitamin D3 for FFA. I will give it a try. 

Halfbakedwho are you satisfied with your hair specialists in Paris?

I was very happy with the Clinique Saubouraud, and would continue going there in spite of the difficulties getting an appointment and the wait (up to two hours) when you're there - because the doctor really took her time and was very thorough and informative. BUT - since it's so hard to get an appointment, and since the woman I saw is only available on Thursdays (when I work in my other office) I am going to a private practice and I'll see how Dr. Bouhanna is. Apparently he does grafts, even with FFA patients. I don't need a graft, but maybe I will... though I think if it gets to that point I would rather just wear a hair piece. 

I have been really tired lately, but it's been a hard February. I have taken off time from dance and exercise to heal my stupid foot, and to just rest. 

I have so many oils that it's probably a bio-hazard. I am not itchy, but I oil my scalp and hair the night before I shampoo it. It's not pretty ; ) ... Castor, coconut, and red pepper oil. Add croutons and chopped greens, and it's perfect. 

Pascal Hi. I am interesting that you have rosacea as well as FFA. I developed 18 months ago

My FFA is under control with very little loss and none for a year but the rosacea is now causing me as much misery. I don't go out in the evening as that is when it gets really bad. I look as if I was a hopeless alcoholic .

I am being treated with long term antibiotics but I can't see they really make much difference.

Thank you Ilustr8r for infos; I didn't know about B12, I use B complex + biotin, but a low dose, daily. I will try with bigger doses. I also get more itchy if I overdue with sugar/diary/gluten. Halfbakedwho thank you for your comment about your hair specialists, I will have to find good ones out of my country. Dee I understand what you mean; my rosacea was very serious for 8 years, then a year ago I didn't get so red in my face, and at that time my eyebrows started to fall off and I also developed Hashimoto. How is your thyroid? Now I think that rosacea and thyroid are correlated; the moment my thyroid started to fail and I developed Hashimoto, the redness was not so intense, sometimes I wasn't red at all. But it didn't disappear. My thyroid problems started in addition with the loss of eyebrows, and were followed (6 months period) by irregular menstrual cycles, so it must all be connected.

Viruses seem to trigger autoimmune diseases, HPV and Herpes virus are specifically indicated for (Oral) Lichen planus, so they are also (I presume) connected to our illness which is a subtype of Lichen Planus. I'm very interested to know whether someone of you knows how to cleanse the body effectively from viruses? Would boosting the immune system be an answer with autoimmune diseases (appart from gut healing)?

Hi everyone I'm just sending this as a test as I have had trouble downloading my previous 'Comment/Discussion' to the forum hoping it will get thru...??

For those ladies on the forum who,like me, believe they may have both FFA and diffuse LPP, I found this recent article www.karger.com/article/fulltext/479799 from Karger "Skin Appendage Disorders" 2018;4:105-107 "Clinical Description of Frontal Fibrosing Alopecia with Concomitant Lichen Planopilaris". It describes involvement of the non-scalp hair areas AND presence of other symptons (eg more pain,itchiness,facial papules, loss of eyelash& body hair, amongst other symptons),possibly being more frequent in these patients.

Hi everyone

D-2 for my next specialist appointment. Pascal, you have more hair than me on the sides. No more sides for me. My hair on top is thinning, and my forehead is larger. I haven’t lost any eyebrow, knock wood, nor much of anything else though there’s less of everything else. 

I am making it a nice trip to Paris with son #3. We will stay at an AirBnB, and am adding on a seminar to make it a business expense trip. The guy (new doctor) looks like an intense self-promotey kind of guy. I don’t mind that if he can help. But I am not getting my hopes up - in fact I’m going because I feel like it would be irresponsible to not go, to not keep trying to find a way to slow this down. However I don’t think anything is working particularly well. And again, I don’t like it - I really, really don’t like it - but life at 52 is hard enough and there isn’t enough time left to rail against the unfairness of it all, and do all the cool things I still want to do. 

I will let you know what the man says of course. 

We all seem to have the same thing, but maybe not quite in the same way, it would seem. 

I came across this video on YouTube and thought some of you might be interested. This women created a frontal hairpiece for those with FFA. It's like bangs attached to a hairband, and she is offering to make them for people for $25 plus free shipping. It may not work for everyone but could be a good fit some. Check it out. 

https://youtu.be/RbEIYMNQXy0

I like her video & the hairband piece looks great! I don't think it would work for me, but for some it might be the perfect thing :-) 

Jess & Minter, I saw the same video, and I'm going to get crafty and try to make one myself. Waiting on human hair bangs, so we'll see. (Her's were synthetic). It's a great idea if it works.

Good luck! Let us know how it turns out :-) 

So I met with Dr. Bouhanna (Dr. Famous Man) yesterday. He changed my treatment - no more Minoxidil! He says he’s not convinced it does anything. Neither was I! 

But - stronger and different steroid to put on my scalp 2x day, and antibiotics - tetracycline - b/c there is some inflamation and « little red dots ». 

He was nice, he said he is seeing more and more of FFA - that he’d just had a man in on Wednesday... it’s getting more common. Isn’t that so weird...? It really makes me wonder what we’ve been exposed to - a sort of modern mutation, a modern plague? 

The good news - there was actually plenty of good news... 1. Thinking I was losing my hair at the nape was just a paranoid figment of my overactive anxious imagination. 2. I’m not losing my eyebrows. Again, Knock wood. 3. He does GRAFTS, people. He really does them. For real. He will only do it when the hair loss stops, then he will try a test implant, then if it takes, he does the whole thing. 

He has done conferences in the States, and is familiar with CARF. He had some big hair-follicle trophy on his desk from an award (iinvolving giant follicles I assume) from the States as well.

I told him I didn’t expect much and was feeling pessimistic and resigned, but he also said he is on the forefront of new treatments, including an anti-androgen that is currently being tested. 

Expensive visit though - 100 € with practically no reimbursement. But I’m not going to miss Minoxidil, which was also expensive and not covered. 

He wants me to take pictures of my scalp which I guess I’ll do. OK I will. I don’t want to. OK I will. Tomorrow. Or Sunday. 

Meanwhile, it’s nice to be in Paris, but we are glad we live in a more normal town ; ) 

Thank you for the report HBW! I'm not glad that there are more cases of FFA but it's good that maybe finding a cure for it (or at least what causes it) more likely...some day. I also hope they discover it is reversible! 

We still need a Hollywood spokesperson to make it "real" to those who just don't get it.

Enjoy the rest of time in Paris! :)

Yes, thank you Halfbakedwho - very interesting report. Enjoy your time in Paris (I was there several years ago, nice place to visit, but wouldn't want to live there)! ;-D

Hi, Really stressed out about the hair today. Has anyone tried a laser comb? If so, how did it work? Thank you.

Anonymous, I did not use a laser comb but I tried the laser helmet. It does not work because the hair follicle has completely shut down. To my knowledge there is no cure for making the scarred hair follicles active ever again. Only treatments to help not lose what you still have. It is the most bizarre and disheartening condition for sure!

One woman and I initially lasered 1/2 of our head.  The redness around follicles on the lasered side resolved for both of us.  We both continue to laser.  Just laser, no meds for me and I still have hair loss.  Is the hair loss slower or the same if I didn't laser, who knows.

We recommend seeking a salon that uses lasers to laser 1/2 your head first to see if it makes a difference before spending $$ on one.

I would be interested also if anyone has used the NAC and L-tyrosine. If so, for how long to see results? The side effects concern me. Has anyone used copper peptides. It looks like something you put on your head to promote growth from thinning hair or dormant hair. 

Has anyone with high antibodies have them come within range? My endo says that once they are high, they are always high. Had mine tested and they are still high with the armour thyroid medication, but not as high (still above range). Thank you,

Has anyone had their eyebrows micro bladed?  I’m getting closer & closer to doing it. Just  nervous. I have almost no eyebrows at all. But hear nothing but good about it,

Donna, I had my eyebrows micro bladed last fall. It's nice to have something there. Is it perfect? No. That's why I didn't want permanent tattooing. It fades between one and three years. No one else seems to notice the shape is a little off and there's some variation in how the color took. The follow-up app't hurt more than the first app't. I'll do it again, but I'll draw in my shape, and see if there is someone else who I might like better. 

Got my eyes checked today and my eye doctor knows all about my FFA and how it affects my eyelashes and brows. She said that Latisse is developing a treatment for eyebrow loss (probably stronger than the one for lashes) and also for hair loss on the scalp. Whether that will help us or not is unknown but I’m excited about the brow formula. I brush Latisse across my brows after I do my lashes and they have filled in a bit, boosting the look of my microbladed brows.

@Donna, go get your brows done! Do research and find someone with happy customers and lotsa before/after pics. Im so happy that I did. :)

Hi Pascal, just read your post from 3/2 and your wondering about underlying infections. I believe there are. Have you heard of leaky gut? or the Medical Medium? Google both. Very interesting info. I have gone through treating leaky gut/candida among other things with diet and it has helped tremendously. My hair loss has not progressed in the last 2 years. Besides the hair loss, I had rosacea and LLP around my lips and those are completely gone.

Donna, do it! Microblading was the best thing I've done for myself- even before this all started I had pale blonde, not great brows and every. single. day. it was powder, pencil, repeat, check throughout the day to make sure my brows were still "there" then I discovered tinting for brows but still had to powder & pencil to fill them in and they just looked fake and made up and not good at all. 

It took me a good few months to finally do it after I first started thinking about getting my brows done, but after going to my first consultation with my (awesome)! technician I felt much more confident about it and am thrilled I did it! Yes, the first week or so is awful because of the healing, but once that is done it is totally worth it-   If you decide to do it, look up your local technicians and check them all out, go to a few consultations and see who you feel comfortable with :-) 

I had posted a while back about losing eyelashes. I have been using Rapid Lash which I got from Walgreens drugstore. It, thankfully, has worked. My lashes have grown really long. They are not full and lush but they have definitely grown back to the point where I can put mascara on them and look decent. 

I have had my eyebrows tattooed on. I use a pencil on top of them to darken them a bit but overall I’ve been happy with them. 

I'm curious how many of you have rosacea as well? I had issues with it years ago but it seems to have reared it's ugly head again. Or is it from FFA? My skin feels hot, around my eyes are red and itch and my forehead feels so tight. And my scalp is red and feels hot not just a long the hairline but all over. Feeling SO frustrated by all of this.