Thanks Maddy for your information. I an hesitant to change it when it has dealt with some of the irritation and isn't causing me any major side effects. I will discuss it more when I see him next

That is very interesting and something I will try!! thank you for sharing, Will be healed, and thanks for telling us the length of treatment before you saw results!

Debs could you please send me a copy of the FFA fact sheet, or if anyone that has a copy that would be willing to forward. Email: ddilldine@tds.net

I recently received the info sheet from Debs so would be happy to forward it to you.

Lo, I just emailed you a copy of Debs sheet. Hope you got it.

Ladies, I really don't understand why you put your bodies through all these wierd medications and toxic stuff.  Isn't it bad enough that we have been afflicted with this ridiculous condition?  My derm tells me that all the meds you are trying have no evidence of working, gave me the same options, but I took a pass.  I am doing my best to be healthy, eat right and exercise (although always a problem at the gym with the way I look!!!!!), and just get through this and try to enjoy life as best I can and be thankful it is not terminal or something really awful.  With my wiglets I look as reasonable and as much myself as possible and that is the best we can do.  I am trying not to stress,although I certainly have my days.  But I feel taking medication for malaria, etc. can only add to the toxins or whatever that have already caused this. 

Agreed.  I hope it helps you.  I never had rash or spots, so didn't feel the need to treat.  Anyway, it does seem to be slowing down and I am just living with it, what can you do.  It is for sure the hair will never grow back.

If your dermatologist  is knowledgeable on FFA, would you mind sharing his/her name and contact information. I live in OK and have been unsuccessful at finding and educated doctor with FFA experience. I am more than willing to travel to ensure I get best advice/treatment possible. I'm pretty frustrated with the dermatologist search. There are many doctors on the CARF list, however, I would like anyone's first hand experience as well. I know some of you are happy with your dermatologist and I would appreciate if you would share their information. If you don't want to post their information on here, you can email me directly: ddilldine@tds.net  Thank you in Advance

My dermatologist was familiar enough to diagnose, but certainly has not been able to do anything about except declare she thinks there is nothing you can do.  She has recommended another derm who specializes in hair restoration surgery, I have called to see if they are familiar or had success with FFA, but have not heard back, which I think is so rude!  Anyway, if you are still interested, I will give you the name of my dermotolgist.  As I said great at diagnosing, but no great answers.

Like everyone else, living with FFA can be really depressing but the other day, I made a conscious effort to look on the bright side and have come up with a few positives:

I no longer have to shave my armpits

I haven't grown 'granny hairs' on my chin

I don't have hairs on my top lip any more

I don't need to shave my legs

I've had my eyebrows tattooed and they're a much better shape than pre FFA

I have no pain, FFA isn't contagious and it won't kill me!

I've got a lovely wig that I wear when my hair looks a mess 

I have my 'down' days but several of my friends have far worse ailments - some life-threatening.  At the end of the day, it's only my hair and I'm determined not to let FFA ruin my life!!

With my very best wishes to you all

Jean

I agree with all....summer is a little tougher with wind, swimming and exercise, but as you noted, there are worse things.   I should eat healthier and am working on that.  I did stop taking shots and extra medications; I don't even use rogaine any more.  If I see a derm who does hair restoration surgery (transplant) and there is hope i will certainly let you all know.  

Just got an email from CARF asking for volunteers for a new FFA research study that is starting up here in the U.S. Here is the info:

A Research Study to Evaluate Frontal Fibrosing Alopecia

Frontal fibrosing alopecia (FFA) is a type of scarring or permanent hair loss that was first described in 1994. It typically occurs in post-menopausal women of European descent but has been reported in men, premenopausal women and other races and ethnicities. It typically involves recession of the frontal hair line, redness of the involved scalp, and eyebrow loss. There is no known cause and no established treatment.

A multicenter, data collection research study is now going on at 9 different sites across the U.S. If you, or your dermatologist, feels that you may have this condition, please either contact one of the sites directly or ask your dermatologist to contact the site on your behalf. The study doctors first request that you be seen in their clinics for a routine visit for hair loss and then if your diagnosis is confirmed to be FFA, you would be consented to participate in the study. The study would allow the study doctors to collect further information on your hair loss condition and for you to fill out an online questionnaire that may help to lead to information about what is causing this disorder. There is no treatment or compensation related to the study.

If you are interested in participating in this study, please contact or have your dermatologist contact one of the following sites closest to your home.The sites will set up an appointment for you to see the study doctor.

Duke University (central site)

Durham, North Carolina

Investigator: Elise A. Olsen, MD

Contact: joan.wilson@dm.duke.edu

Callender Center for Clinical Research

Glenn Dale, Maryland

Investigator: Valerie Callender, MD

Contact: FTitanwa@CallenderSkin.com or 301-352-1520

Cleveland Clinic

Cleveland, Ohio

Investigator: Wilma Bergfeld, MD

Contact: 216-444-5722 or 216-445-9110

The (Kaiser) Permanente Group

Orinda, California

Investigator: Paradi Mirmirani, MD

Contact: 707-651-2552

Northwest Dermatology and Research Center

Portland, Oregon

Investigator: Janet Roberts, MD

Contact: 503-223-1933

University of Miami

Miami, Florida

Investigator: Antonella Tosti, MD

Contact: CKittles@med.miami.edu

University of Minnesota

Minneapolis, Minnesota

Investigator: Maria Hordinsky, MD

Contact: 612-624-5721

University of Pennsylvania

Philadelphia, Pennsylvania

Investigator: George Cotsarelis, MD

Contact: 215-662-2737

Wake Forest University

Winston-Salem, North Carolina

Investigator: Amy McMichael, MD

Contact: amcmicha@wake.health.edu

Sad in Chicago, how long ago did you stop using Rogaine? I have toyed with thd idea of giving it up, especially since the new hairs are all gray and unruly, but am afraid of losing a kot of hair. It took a long time for new ones to grow out.

MJ, do you have any information about the progesterone treatment your doctor discussed with you?    Since there's obviously hormonal involvement in the development of FFA it sounds like maybe they're finally getting on the right track in trying to figure out why this is happening primarily to peri- and post-menopausal women.  And why is this a fairly recent phenomenon?

Thanks, Linda

Thanks, MJ, Cleveland's about four hours away which is not an awful drive, esp. if I'd only have to go a couple times a year.  I'd definitely like to participate in the research study so will contact Dr. Bergfeld/ the Clinic.  It would be nice to feel that progress being made in figuring this condition out somewhere, somehow!   

I also have an appt. next week locally with bioidentical hormone doc for some testing.  Not sure if I'll go that route but curious to see what tests show about any hormonal abnormalities or imbalances.   I'll share anything that seems pertinent or helpful.

An interesting aside (or not?) I read recently that, when tested, 34% of patients with lichen planopilaris were also diagnosed with thyroid disease--as compared to 11% of the general public.    So this is definitely an endocrine issue not just some "mysterious" rash that appears with no rhyme or reason.

http://www.ncbi.nlm.nih.gov/pubmed/24569115/

Linda, that is interesting. I've always wondered if there was a link between the two since I've had thyroid problems (had a nodule on one removed and been on meds for over 10 years) and been affected by FFA or LLP for the last 4 years. 

I just wanted to update you all on my biopsy results. The biopsy showed lichen planopilaris with moderate inflammation. My dermatologist is referring me to a scarring hair loss specialist and gave me a prescription for Topicort and Plaquenil. Sigh. 

I've also recently been diagnosed with under active thyroid and estimate that I've probably had FFA for about 6 years.  I have no eyebrows (but beautifully tattooed on) and no bodily hair apart from eyelashes, which come and go.  Like many FFA sufferers, I have other autoimmune issues, including psoriasis and arthritis. There seems to be so much commonality between us that it may be interesting to produce a 'profile' to assist with research - although I'm sure that's been done before!

Hello!  I just received my biopsy results…I have Lichen Planopilaris.  I have received no information from the doctor.  The nurse left me a voice message giving me the results and minocycline prescription was called in.  Help!  Does anyone know of a Specialists in Albuquerque,NM?  I am considering going to Mayo.  Has anyone had any experience with them?  Thanks!!

Is the factsheet that is mentioned as being provided by Debs available anywhere online?  I am searching for any information because I have recently been diagnosed with FFA. Thanks!

All you need to do is google it....there is a ton of stuff on the internet.  Also, once you go down this road, you find a myriad of ads for hair restoration, wigs, etc.  

Terry, you might want to recheck the biotin dosages. The supplement I take is 5,000 mcg, as in micrograms not milligrams,  which is 1,667 times the RDA. I buy it at Costco and it dissolves in the mouth. Of course, here is no way to tell if it is helping.

Mel, I can share my experience with Plaquenil as well.  As a nurse working with the blind for many years, I was obviously very hesitant to try it.  However, being newly diagnosed and desperate, I decided to try it.  I was diagnosed with FFA Feb '14 and took Plaqenil and Doxy starting in March'14.  Had my eyes checked in June and then again in December '14...the recommendation is every 6 month eye exams.  Well at the December checkup, after being on it for 9 months, the eye doctor noticed some slight changes to my retina.  I noticed no vision changes.  I came off it immediately.  Both my derm and eye docs said the damage caught that early would be reversible.

I have now been off Plaquenil for 6 months and have not noicted any changes in my rate of hair loss.  For me, the Plaquenil and Doxy didn't seem to make much differeince. Thankfully my hairline loss has been very slow.  The hair on my legs is pretty much completely gone over the past 6 months.  Finally something to be grateful about with FFA!  I do continue with Clobetasol to my scalp, although I apply it randomly every few nights, not religiously every night like I did last year.

I do have a colleague with FFA who swears by the Plaquenil.  She takes it for Lyme disease as well and says that when she is off it (I think she takes 6 month breaks) her hair sheds much faster.  She has lost over 2 inches of her hairline in about 4 years.

So I guess my point is, Plaquenil may work for you.  If you are faithful to your 6 month eye exams, any damage would get caught early.  I am glad I tried it but will not go near it again.  Good luck in whatever you decide, this is a very frustrating disease.

Hi Lo, My friend with the hair loss still wears it naturally.  You would never know to look at her.  Her bangs start way back, she has very straight hair.  Her eyebrows are tatooed (she was the one who referred me to an excellent eyebrow person) and look very natural.  I think she has had FFA for about 4 years and has been on and off Plaquenil during that time.

I have very thick curly hair and began with a low hairline, so thankfully the hairloss is not noticeable to others.  I now sport bangs, which are a bit tricky and took some getting used to with my curls, but now I like them.  My hair stylist calls bangs cheap botox!  The skin on my forehead seems to have changed and is sort of bumpy...maybe it's age, maybe it's the FFA, or maybe it's been like that for years but I've only put it under a microscope since my diagnosis ;-).

My hair loss has been very slow.  I first noticed it around Thanksgiving '13, and since then it's only about a 1/2 inch or so. My derm in March remarked that i've stabilized and my hair stylist insists she doesn't see any loss, but I'm not so sure.  Now that I have bangs I don't monitor and stare every day at my hairline.  I was taking photos of my eyebrows and hairline every month, but I havne't done that since last June.

I swear I read somewhere that if eyebrow loss occurs first the case tends to be more mild.  But now I can't seem to find that article.  I have lost my thick dark eyebrows completely, over the course of a year.  If my hair remains like it is now I would be one happy lady!

Hi all.  Thank you for all of the discussion on Plaquenil.  I have not taken it.  I had thought of taking it a few months ago when I reacted with rashes to the foam Clobetasol and to the Kenalog injections.  My derm told me I had to see my eye doctor to get the ok, and then, I just decided it was not worth the risk.  I've had FFA from 2006.  It was not diagnosed until 2013.  I have lost all of my eyebrows and at least two inches back of my hair.  I no longer can even cut a bang that doesn't look funny, but as I have let my hair grow, I have been able to do a side long bang that is curly.  My new hairdresser convinced me that it looks like I have a high forehead, but that it doesn't look odd.  She encouraged me to wear my hair as it is after I had actually already given up on the wigs and toppers.  I was uncomfortable in them.  They covered the hair I had left that I still liked.  They were hot and itchy.  I was just at a place of acceptance.  I am wearing my hair that I have left, and I am over stressing about the loss.  I am not treating it.  I am just accepting it.  My hair dressing suggested using a darker shade of bronzer on my hairline to contour and hide the high forehead.  I haven't tried it yet, but I thought you might like to see the youtube video she showed me.  It can be found here:  https://www.youtube.com/watch?v=16mWjaMHRJI  Acceptance is a powerful and freeing thing.  I may find I am less accepting if I lose more hair, but I am at as much peace as possible at this time.  

Hello Missy and welcome. I buy all my wigs from www.hairsuper.com. I shop online and pick a wig I like and then I go to youtube and find video of ladies who have purchased the wig to see what it actually looks like. Every wig I have purchased has been great for me.

Sallylwess, I am also trying to disguise a high forehead. Not so easy to wear bangs with curly hair. The video you posted was interesting.  Has anyone had sucess using sunless tanners along the hairline?  There was a discusdion about I a while ago.