Hi AnnieMay, I have had lichen planopilaris & FFA for at least 5 years now; that was when (out of the blue) i had a sudden onset of a burning sesation over top of my scalp, odd tingling/crawly sort of feeling in front & my scalp  became extremely tender; sometimes it was a kind of prickly, crawly sensation& my scalp felt raw, dry & tight; for some months & especially the couple of weeks prior to onset of scalp pain/tenderness & later a horribly haunting itchiness, my hair txture changed from a softer, looser wavy/curly to becoming extremely dry, course & very curly growing more kinky (not in a nice way), like wierdly kinked. I've lost probaly around an inch (or a bit more) back from forehead, bi-temporal & all around my ears....i have also had diffuse loss over my whole scalp. My biopsy stated that the features were indicative of lichenplanopilaris & FFA, & also said it showed no evidence of androgenetic alopecia. I have done a huge amount of research on this disease & come across some information that says lichenplanopilaris can either appear as patches of hairloss or more diffuse over scalp. I have also had a lot of tiny sore papules (coming & going) over past 5 years; but also, during that time, in between painful periods, i have experienced my scalp sensations to have somewhat calmed down (where scalp tenderness became much milder, not so problematic & hairloss very very slow). The texture eventually, after about 18 months did improve & became less kinky. It has, at times, been pretty much a nightmare, to be not only find yourself with a scarring alopecia, but for the hair to change to such a horrible texture & to it off the nasty scalp discomfort just to remind you that the disease is continuing..... at times it's a real challenge living with this& can be quite haunting!!

I forgot to mention that i had pretty thick hair before all this started, & it mostly felt nice running my fingers through it; the texture change was pretty awful.....it has become much looser softer over past few years, but it is getting thinner & thinner, diffusely & still moving back from forehead  & all around ears slowly but surely. I believe i had a lot of  hairshafts diffusely over my scalp (from my relentless research) that looked like something called acquired pili torti.....

Hi Agneta After much research on this disease & treatments commonly prescribed, i made a concious decision not to use any of these drugs. Pretty well any of the articĺes on the subject state uncertainty as to whether there were any real benefits fr

om the treatments/drugs taken etc or if improvements in symptons were simply  a result of the natural course of the disease process. They mostly seem to be pretty harsh drugs with potentially harmful side-effects & i just felt the risk not worth it....Having said that, I would never place judgement on those that decide to go down that route as it is a horrible thing to be living with 'day in day out' & understand the desperation people feel.... I myself have often found the symptons of this ghastly condition to be extremely emotionally & psychologicaly distressing & disturbing. But other than the emotional disturbance & challenge of trying to LIVE WELL  whilst having to deal with the relentless symptons of LPP/FFA, i have experienced exceptionally good health most of my life, 59 years, & just don't want to risk jeapardising that from harsh drug reactions (short or long term). My own symptons have waxed & waned (without any medication) over the past 5plus years.....the whole senario is just a mystery to me......Has your loss been slow & have you also had much pain/tender/itchiness with this or hair texture changes as well, ....?

Dutasteride 0.5mg daily has a 50-60% chance of arresting the disease where it is at with little or no side effects. It worked for me 5 years ago. I do not know why it is not mentioned more on this blog. It is worth a try.

I am on Dutasteride, and I can only guess that it has slowed the whole process down along with my daily Rogaine application.  

Hi Nancy79, it is good to here that you have had success with dutasteride without any side effects & the disease seems to have reached burnout in your case.  Have you experienced much scalp pain tenderness ichiness etc before starting on it (&/or while taking it) & how long were you taking it for before noticing a difference in symptons, including hirloss activity & scalp sesitivity (or did they continue but at a milder & slower rate of hairloss)....What has your general pattern of loss been & over how many years since it started..??? I think that most doctors (& the majority know nowhere as much about this disease as many of us on this site) probably take a precautionary action in prescribing dutasteride to women (even those past childbearing age) as "available data with regard to dutasteride side effects in women is extremely limited"... Refer to article sciencedirect.com/science - March 2017 Elsevier Intl Journal of Womens Dermatology - "Hormonal Therapy in FPHL"..."dutasteride is not approved for treatment of FPHL by the FDA; ongoing studies on the efficacy of dutasteride inhibitor are promising but largely focus on male patients (2014)"..... The article also mentions the theoretical risk of breast cancer in use of dutasteride as mentioned in relation to finasteride (Kelly et al 2016),as they are both in same class of hormonal therapy 5-alpha-reductase inhibitors. My understanding is that it has had some positive results for androgenetic alopecia & limited shown for FPHL but have you read any articles/studies for effectiveness specifically in ffa/lpp.? Sorry for so many questions, but you sound like me, having done quite a bit of research on this disease, ...which i wish i'd  never heard of....but nerertheless am stuck with....& its anyones guess for who knows how long...!!!!  Thanks jules

I knew there was something wrong with severe itching of the scalp. It did not take years for me to notice something was wrong. I found a small 1/4 inch wide and 2-3 inch long strip of hair missing behind the hairline on the right side of my forehead. I could see the follicles were red with a lighted magnify mirror. There were red follicles on the left side of the forehead but no hair loss yet. It has been five years later now but this side has finally dropped out too. I have lost a 5 inch long 1/2 wide strip along the front hairline.

Dermatologist seem to be the only docs that deal with hairloss so I let one burn my scalp with clobetasol. But the was the last one. My own research 5 years ago at a university medical library showed that most if not all of the treatments that had been tried had little to no effect on FFA but did have a lot of bad side effects. A study by Duke compared all the treatments on FFA and concluded Dutasteride had a 50-60 percent chance of arresting it with little to no side effects.

Dermatologist refused to write the script but my general practicitioner did. I can dig the research paper up if you need it.

I had noticed it was taking less time to dry my hair before the itching started so I think I was having defuse shedding over the head as well as the FFA starting up. Overall shedding stopped the first week on Dutasteride. The itching stopped with 1-2 weeks and the follicles were no longer red soon thereafter. The hair loss in the rest of the affected follicles slowed so much that I did not even look at it a year later.

I have had no side effects. I find it funny that people are willing to take drugs that can permanently harm their eyesight or shots that thin the skin and trickle down the forehead so much that the blue veins show thru and they are permanently disfigured but are afraid of this drug because adverse side effects have not been determined yet. The drug in generic form only cost me $10 per month at Costco. That is less than my insurance copay so I just pay cash for it. Hopefully it is that cheap in your area.

Consider me a 5 year test case. I have had no ill effects. Last summer I tried to cut back and take it every other day but quickly the overall diffuse shedding began again. After about 4-5 weeks I could no longer stand it and went back to taking it daily. It took a couple of months but the overall shedding stopped and I am back to normal now.

This is how the drug worked on me and I wish docs would try it first and not last with women.  Women seem to lose so much hair in the meantime and expose themselves to bad side effects and extreme expense.

I was diagnosed in April and my dr has only prescribed topical steroids and tacrolimus lotion. Like so many of you I'm not sure why because it seems that steroids are ineffective for hair loss and FFA? I honestly feel like the shiny scarring along my hairline is worse since I started using the steroids and my scalp seems so dry and I know I've lost more hair. When I first started having symptoms I started using a product made by "Just Natural Hair Care."  They have a lot of products but I used the adult Women's hair loss treatment which is made without any chemicals and all natural oils. I used it again last night and I love the way it calms down my scalp and makes my hair feel soft. I think I'm going to take a break from the steroids and go back to using this for awhile! I have a dr appt later in Nov (dread having her inspect my hairline) and I'm going to ask about dutasteride as well although I would prefer not to take anything. But I have to feel like I'm doing something . .  

Thank you reminding us pauliegirl! I just re read the study again and it is encouraging. I will bring it in to my appt. But then I look up the side effects and read this? 

Isotretinoin and Hair Loss

One major side effect of isotretinoin is that it dries tissues, causing dry skin, cracked lips, dry mucous membranes, and dry scalp.

It may thin hair or cause it to become dry, brittle, and fragile.

This happens because isotretinoin slows down or blocks the production and secretion of the body's on own natural oils.

According to anecdotal reports, isotretinoin may not only thin hair on the head but also on the face, causing a loss of eyelashes and eyebrows.

Some people may become bald.

Although hair may regrow a few months after stopping isotretinoin, some people report that it took several years.

Others say isotretinoin caused permanent hair loss.

Agneta, I can understand the emotional distress you have experienced with symptons of this condition, as have many others.I don't know that I am braver than anyone else going through this; I also found myself in a pretty distressed state, especially in the beginning with sudden onset (late 2012) of the od scalp sensations, extreme tenderness, pain & hair growing out weirdly, soon followed by hairloss from sides & front. I knew something sinister was going on & was visiting my GP within a few days from when it started as it just was so unusual & quite frightening. I soon became quite depressed and also had to start on anti-depressants. My GP is a lovely woman ( same age as myself 59..i was 54 back then ), but she just had no idea what it was. . .she made diagnosis of possibe psoriasis, but soon realised it wasn't that. Next step was referral to a dermatologist ( female ) who looked at my scalp once only ( 3 visits over a 6 week period ) & she diag me with Seborrhic derm. I soon realised from the description of visual symptons of SD, that it seemed pretty unlikely it was that ( I think the derm made her diag by my scalp pain/sensory description alone ). . . . she persisted thatSD was what I had, told me to keep using ' head&shoulders ' shampoo & any conditioner. . . I did so much research trying to figure out what this could be; came across symptons of lichenplanopilaris & FFA & felt this sounded spot on to my own. . . but when I suggested to the derm that I thought I might have ffa / lpp, she simply said " oh, no, I have had patients with that, you don't have that ". . . then she pulled back hair from her own forehead saying " we all have some hairloss at this age, it's called the xmas tree effect. I also wanted her to examine some hairshaft samples ( as I mentioned previously ) that I had diffusely over my scalp many odd dystrophic looking twisted kinked shafts ( that had irregular sections of kinks / bumps along shaft & felt very course)...i felt all this must be connected, but she refused to look at them, simply saying " oh, we've all got a few funny hairshafts. ...she just would not even consider my suspicion that this could possibly be what I had. ....kept sending me away advising me to use h & s shampoo & cetaphil lotion on scalp in areas that felt dry & raw,  was all so demoralising. ..obviously I soon realised wasn't going to get any valid answers from her. ...just felt so alone & depressed. 

I never went back but my symptons continued and eventually I went to another derm ( around 7mths later ); he couldn't see anything on my scalp to give any clues, but then again he didn't use any highly magnified tools to look at it either. . . . I then asked, could my pain be coming from under the scalp surface as in cicatricial alopecia & he said only way to know for sure was via biopsy. . . . & thats when I got results of lpp/ffa. ...has been a long emotional roller coaster since then. ....try my best to get on with it, so to speak, but I do understand just how hard this is; would be  great to just get on with living life, however  the symptons of this disease really can, often, make that a very difficult thing to do!! I apologise for the long posts, but sometimes it feels good to vent espec to those who truly get how this can be such a struggle...thx for listening

Nancy79, am i right that in your earlier post you mentioned you cut back on dutasteride but had to go back to using every day as you noticed increased loss. Does that mean you've been taking it for 4 or 5 years pretty well every day? & is that a .5mg dose? 

Although i've chosen not to take any of the experimental drugs for treatment of ffa/lpp (mainly over concern of  harmful side effects & flimsy evidence of their efficacy),  i do agree with Nancy that it does seem strange that doctors will keep prescribing them to patients, but not allow patients, if they wish, to try something that has been used in trials with reasonably better outcomes than drugs used previously; seems a bit hypocritical. CARF website states that doctors should allow patients to chose either 1. to try drugs/treatments on offer or 2. not to use any treatment; as they really can't claim for certain that any of them actually work. At the very least, doctors should be educating patients of all the risks & benefits so at least we can all make our own personal choice. Trouble is that, while there are some good doctors out there, some don't do enough of their own research when using treatments for rarer uncurable conditions; sometimes it seems much of it is just trial & error where many patients are being used as guinea pigs

I went back to my notes and discovered I have been on Dutasteride 0.5mg daily for four years (Feb. 2014) except for my attempt to cut back to every other day this past summer. Let me be clear, I did not suffer any additional loss at the front of the hairline when I took it every other day, only increased hair in the drain which was increased overall shedding. (I may two things going on) In four years I have had no side effects and the literature also reports patients experienced no adverse side effects. In my case the drug stopped any new follicles from becoming inflamed and slowed the progression of fallout of existing inflamed follicles so much I only occasionally looked at the hairline. (This is the same positive result reported in the studies at a rate of 50-60% of the time) I feel now I am in burnout.  Sorry, I thought I had been taking the drug five years.

I dug out the research studies that led me to this treatment:

Frontal fibrosing alopecia: A retrospective review of 19 patients seen at Duke University. Barry Ladizinski MD ( among others) Journal American Academy dermatology 2013;68:749-755.

Frontal fibrosing alopecia: A multicenter review of 355 patients. Sergio Vano-Galvan MD (among others) Journal American Academy Dermatology 2014;70:670-678.

These studies compare all of the treatments that had been tried to date and list the positive results or lack there of. Dutasteride was way on top with no reported side effects. It was  a no brainer for me and I have been on it ever since. This drug was not being mentioned on this blog 4 years ago. I made entries but really got no replies until just recently. I avoided wasting a lot of time, expense, hair loss and possible adverse side effects by going to the most effective treatment right away. I hope this helps and your doc will look at it. If not, get another doc.

 I'm sure it's in a previous post but are others experiencing overall thinning? When I brush or run my hands through my hair every morning I lose so much hair.  My hair used to be so thick but now my bangs are so thin (my hair stylist had to cut my bangs further back this appt to cover the loss in my temples and it made me cry) but now my ponytail is getting smaller and smaller. . .Ugh

Hi ladies,

I too have FFA and I just wanted to share the knowledge I have collected since being diagnosed about 2 years ago. I have been thoroughly miserable with this condition so I am hoping my post will provide some reassurance. I have been seeing a very reputable consultant in London who specialises in hair only. He is one of the only, if only, dermatologist in the UK (Dr David Fenton) who only deals in hair and other dermatologists refer very difficult cases to him - both my GP and my first consultant dermatologist mentioned him to me. He told me two things that reassured me:

1) the average time for this condition is 2 years. 

2) the condition is very treatment in his opinion. My husband specifically asked 'how treatable is this condition?' and his response was 'Very. I have only known two patients who haven't responded to treatment'. He is well in his 50s so I would have thought he has seen hundreds of ladies in this time.

I am on a treatment plan which is at the gentler end of the scale. I was put on steroids for 30 days initially and had to put synalar gel on twice a day. After the steroids, I was put on 250mg of lymecyline once a day. I have remained on the synalar and the lymecyline and I have had good results - no hair loss in 18 months despite my FFA being active. Dr Fenton tells me that there are plenty of other options available (Plaquenil being one). He also mentioned very recently that a new drug has become available which is usually used to treat arthritis which they are having very good results with (I forget its name). All treatment is aimed at calming the inflammation and ensuring that the stem cell isn't destroyed. 

Dr Fenton is currently leading a very large research project looking at whether there is a genetic link to FFA. He tells me that the results so far indicate that there is a genetic link and that this is triggered by an hormonal event such as menopause or HRT (in my case, I think it was pregnancy).

My advice to all you lovely ladies is to ensure that you see the right doctor and get the right treatment. Normal treatments for alopecia are not right in this case as the FFA is targeting the stem cell, not the hair bulb. The treatment regime that I have mentioned is working for me and comes from someone who really knows their stuff.

I really hope this is helpful to you.

PS I also take a tumeric supplement as I know this helps reduce inflammation. I have no idea if it has had an effect though but makes me feel better!

I've had FFA for about six years, have never been pregnant, and am not in menopause (I first started showing signs of FFA when I was about 34). I lost some hairline first, started treating it about four years ago, and while the hairline receding has slowed (stopped? Hard to say officially.) my eyebrows keep burning out (thankfully I got them micro bladed this year - best money I've ever spent.) I have a check up with my doctor next week - will ask her more about the stem cell research on FFA! Thanks for sharing your experience!

Donna, yes, Dr Fenton told me that the average time from onset to complete burn-out is about 2 years. I don't know Premarin cream but have just looked it up and it seems to contain female hormones so, yes, in theory that could have been the trigger for you. Dr Fenton believes (but he is still conducting his research) that there is a genetic link too which is then triggered by a hormone change. Do any of your family have autoimmune disorders? My maternal family do. Another thing I read was around high factor sun cream. Weirdly, lots of sun creams can affect hormones and one study found that ladies with FFA tend to use more 'lotions and potions'. Certainly, I used sun cream on my face every day for years so I have often wondered about this. I haven't asked my doctor about it and they haven't done enough study to prove anything but it is an interesting thought. I now use a sun cream called 'Kiss My Face' which has completely natural ingredients.

Kristen, so pleased that you are happy with your micro-blading. Good for you for getting it done and making yourself feel better. I currently use a very good eye pencil but am considering micro-blading too. I was about 34 when this all started for me too. See my comment above to Donna about sun-cream. Do you use sun cream frequently or any lotion with SPF in it?

Thank you Yummy Mummy.  I have been on birth control pills and hormone replacement almost all my life, (I'm 69). I am suspicious of 

 that having something to do with my FFA. I wonder how many of us with FAA have similar histories. 

Hi all- As I prepare for Thanksgiving tomorrow with my family I think about all of youcourageous ladies here on this site from all over the world. We all have so many different stories to tell as we try to work through this disease everyday. On this forum we share those very personal stories with each other and I am so thankful for that. Happy Thanksgiving from Oregon!

Thank you Annie May for your lovely thanksgiving message. I hope you enjoy a wonderful day with your family and sending you warm wishes from over the pond.

am having a recurrence - there are times when my hair falls out faster than others. I just went to the specialist in Paris 10 days ago, and she changed my treatment a bit. This has not prevented my hair from decided to come out more quickly RIGHT AFTER HAVING SEEN HER. Grrr. Am going to call tomorrow just to let her know. She said the next step is the injections, but maybe I need them sooner rather than later. I am esp. worried about the patches appearing on the top of my head... along with a sort of pimple that inflamed then the hair fell out - and there's some itching. All while taking the Clobestasol and minoxidil. I am thinking that I will visit the hair (wig) place soon even though I'm not ready for it - just for reassurance. Have learned it's the lichen planopilaris but not auto-immune, which is good I suppose. Have not lost eyelashes/eyebrows (knock wood). Thank you guys for listening. 

HBW

Hi Halfbakedwho

I think that unless we are really fortunate, none of the treatments give very positive results :(.  I was diagnosed a year ago, although, I believe that I had had the hair loss for a few years before that, but my hair loss seems to have advanced at a much more significant rate since starting treatment!!!

xOx

@HalfbakedWho I’m sorry that you are having a flare. Yeah, who knows what to do with this stupid disease. I’ve essentially stopped any meds. The Clobetasol was making my temple area thin so you could see the blue veins really well. My family dr said it’s a strong steroid and she was concerned with me using it even a few times a week. She told me to give it a rest for 2 weeks. It’s been longer than that now. The only thing that I have been doing is putting castor oil on my head at night and limiting the gluten because I think it makes my itch all over-the one thing I learned after going off the AIP diet. I’ve said this in other posts- until a Wonder Drug for FFA is invented I’m proceeding cautiously with the random drugs they throw at this mess. Take care. ((Hugs))

I too have stopped all meds. WhTs the point of taking something that isn't the cure? I am convinced that any 'improvement' is the natural cycle of the disease. It waxes and wanes.

My nails are a mess, my hairline is receding, I have no brows....but I get whiskery hairs on my chin. Go figure! LOL

I agree with you on the meds, Beez.  I also have stopped all meds.  I don’t have chin hairs, so I’m lucky there.  I have not eyebrows, and probably 40% of my hair remains.  I only treat the itching and scaling when it bothers me with either clobetasol, or Protopic.

Hi HBW and all, I'm so sorry you're having a recurrence. It does seems to wax and wane. I have good days and bad days. Beyond the receding hairline my hair is SO thin now and I don't understand why?

But honestly for me my skin issues are almost worse than my hairline because I can still hide my hairline. The texture of my skin has completely changed in the last year. It looks SO rough (like large pores) and mottled, "creepy" like skin by my temples, my cheeks, all over my face. I feel like I look like I'm 100 years old and it makes me cry everyday. I asked my dermatologist about it and she said "I'm sorry but it's part of the disease". Great. . .She said that some people come in to see her about their skin and she looks at their hairline and sees that it's FFA. Does anyone else have these dramatic skin issues? It's different from what I see online which seem to be more raised papules.

If anyone has any thoughts on what's helped their skin issues I would love to hear about them. Moisturizers, Retin A, foundations?

I don't take any meds and have basically stopped the topical steroids. I was diagnosed in April, I've lost most of my eyebrows (thank god for microblading), but like Beez I have crazy hairs showing up in places I don't want but a shiny forehead with no hair? I'm also convinced that it what it is and it will take it's course. . such a bummer. . .  

AnnieMay- I had used RetinA for years and I really don’t know if it helped me with wrinkles or age spots. It’s drying and you have to watch your exposure to sun-which I did- but I have several pre-cancerous spots on my face that have to get frozen from time to time. I gave up on expensive creams from the Derm or at the beauty counter. I use Ponds cold cream to remove make up and Ponds Facial Moisturizer (but not to my hairline). I’ve been using Mabeline Dream Mousse and Mabeline Dream Velvet for my foundation. It covers my lumps and bumps and spots really well-and there isn’t any sunscreen which I know might be a FFA trigger. I put castor oil under my eyes and on my head at night. My skin- blotchy and red under the surface. It feels thicker. The worst areas are my chin and the skin about 3” out from the corners of my mouth. My forehead is smooth as glass-no need for Botox there! I use generic Latisse for my eyelashes-a good purchase almost equal to my micro bladed brows. Is a dailygrind isn’t it?  Out and about I look for women my age-envious of their hair and eyebrows and not a care in the world. They just get ready and go just like every other day in their lives...ugh. !!!

well, thank you for your supportive honest responses... very strange. No actually it's not strange - I can practically directly correlate it to some stressful news I received last week. The news has been resolved, but I can't wrap myself up in cotton to stay unstressed for the rest of my life which I still hope will be long. It's worrisome what you are saying about the Clobetasol. I'm on the mousse now, which I put on my affected scalp every morning. She told me that the next step is injections and of course a biopsy. So far I prefer to follow instructions : ( - at least I feel like I'm doing the best I can. I lost a centimeter on top of my head, and the patches grew on the left. 

In one thing I suppose I'm lucky - my hair is very thick, and always has been. So though the front is gone the rest is very much there. 

The whitish skin is just paler than the rest but not too horrible (so far). Spent last night looking up headbands : (. Going to make an appt at the hair place, but my kids say it still looks okay enough (they are brutally honest).