@Jules Australia and others please help me understand; if I understood you correctly some patients can have only FFA, and some have LPP FFA? Isn't FFA one possible variant of LPP, implying that anyone who has FFA has also LPP?

Pascal, you are right on.  Whoever came up with the terminology was stupid.  It should be described by location.  All are LPP. 

So, LPP-Frontal  &  LPP-Diffuse would be more appropriate.

Hi @ PBsunshine!, I am glad you found us! But I am sorry for the reason why :-(   

Pascal, that is such a good question.....& Wyobalance, I think you are 'spot on'. From my understanding, it seems to be the location on scalp which is relevant as to what type of LPP (lichenplanopilaris) the patient has (as described by researchers); either FFA (frontal loss, temples,sideburns, all around ears, basically in a band-like pattern, sometimes nape of neck as well; often accompanied by eyebrow,eyelash,facial arm & leg hair loss, & sometimes accompanied by sensory sympton.). Then there are patients who have just what I have read termed as "classic LPP" which can occur on any part of the scalp, but usually affects the vertex region & can either be patchy or diffuse, usually accompanied by minute papules (pimply like lumps at top of follicle), often with itching, burning, pain & tenderness.....but without the frontal,typical band-like hairloss seen in frontal fibrosing alopedia. However, their are others who seem to have both these areas of loss at same time, quite often accompanied by odd scalp sensations (as described) & so I guess that's where the literature describes those patients who have both FFA & LPP concomitantly. So much of what I've seen written about this disease/disorder often appears contradictory.....some articles say that while most scientists believe FFA & LPP are the same entity, a few believe they are slightly different (histopathologically). All I know is that living with either one or both types of LPP (of which I believe I have both, ffa & diffuse lpp)....well it just simply SUCKS!! I think the scientists/researchers have a lot more to learn & seem to have NO IDEA why some patients suffer the sensory symptons (itching, burning, prickly, creepy crawly, pain, tenderness etc), & yet others are asymptomatic (other than the chronic, progressive hairless). It really does do my 'head in' at times!!! Mind-boggling, bizarre,infuriating, frustrating are just a few words that come to mind....Time for some red wine,watchigt the orange sky as the sun goes down.....Then a good sleep, just to not have to think about it for the next 7 -8 hours....until awakening,...then voila, sunrise & having to cope with it all again for another 15/16 hrs or so......What a life! C'est la vie (for some of us).....I hate it!!! But here we are, all in the same boat, struggling, some more than others, to make sense of it all, wondering, waiting, why, how, when it will end??!! 

Considering what we all have to endure, living with this b#st#rd disorder, I thank you all for validating that my/our emotions, reactions, general feelings, anxieties etc are normal, & not an over-reaction. If we couldn't connect to each other (in this modern day and age) via this internet forum, although I TRY hard to go on & enjoy life as best I can, I think I would have possibly become a 'basket-case' by now, as this can be a lonely disease to live with.... Thankyou all again for being here xxx  

Ps: dusk approaching, time for some more red wine  

Thanks Jules....well said..and red wine is my current medication for FFA...well for today at least..having FFA is certainly a rollercoaster ride...as Jules said, pour another red wine and celebrate good friendships families and sunshine...feeling positive today

Thank you very much for your answer Jules Australia and Wyobalance :*

LPP/FFA implies that we can also experience hairloss on other parts of the scalp, not only the outer hairline? That's what scares me the most...

Hi does anyone experience burning/stinging from head to toe? I think I’m going crazy with worry about what other conditions are lurking in my once healthy body?!  Could it be the medication hydroxychloroquine? the condition? Anxiety caused by the condition or symptom of menopause or hrt? Oh help!?? X 

Hello.  I haven't written in quite a while, but I almost choked on my red wine when I saw some of you mentioning red wine.  My symptoms started, oddly enough, after my drink of choice changed to red wine after years of drinking beer.  Please tell it's not the trigger!  I simply must find something else to blame this on. ;-/  Here's another one I heard as a possible trigger:  beta blockers.   Anyone else start beta blockers around the appearance of your first symptoms?

 Oh thank you for being here - all of you : ). Welcome back Cubbieblue. 

As for me - I too was confused as to what exactly I have. I have lost my sideburns, and the top of my forehead is a couple of fingers higher than before. Nothing else. Still got eyebrows. BUT - yes, weird bumps especially on the top of my head. AND- I no longer have any sensation on the skin where I’ve lost hair. It seemed to be « FFA » but not « LLP ». 

So, Jules, you are saying that it’s *all* LLP, but just different forms? 

Afraid, I really refuse to take anything internally. I am paranoid about side effects, I am incredibly anxious and obsessive too. 

Jules - does it take a lot of work in the morning to fix your hair... is that what you’re referring to when you say at the end of the day you finally get a break? I feel the most freaky at night - it’s when I feel like this just is so unreal, and how can this be happening? And even though I know I shouldn’t go there, I wonder how the hell I’m going to cover this up. Now that I see how it’s evolved over the past few years - no illusions that I won’t look pretty odd in a couple of years. 

On a more positive note, I love the program that CARF is presenting, and really wish I could go. The irony is I will be in the States, in D.C., a week later! THere are so many interesting things in that conference. I hope that CurlyK you won’t mind presenting as best you can pretty much everything ; ).

For example, « The Usefulness of a Scalp Biopsy ». I have been resisting this. I would like to know!! Why is it useful to poke a hole in my scalp? Will « they » learn something from this?

Laser treatments...?? Interested. Optimizing nutrition for hair growth? YES.  And the Mind-Body connection, the Compouding Pharmacy, And of Course the Camouflage. What sort of tatoo should I get on my scalp? (Don’t need eyebrows...Yet). 

On my scalp it will say... « Hair was here. » Or I will get an environmental camouflage tatoo. Since where I live it is mostly gray all the time, my tatoo should be gray, to blend in. But still want the bearded guy for extra protection and warmth in cold weather. Maybe if it’s sunny where you live, your tatoo should be sky blue. Your former hair is thereby camouflaged and no one notices anything but your lovely face, floating in the « sky ». This makes me think of that Teletubbies baby-sun- remember that? And this is me WITHOUT red wine...

For those who still have eyebrows, I have found a cosmetic that works pretty well.  My eye brows are definitely thinning.  Trish McEvoy cosmetics has eye brow mascara (I got the lightest shade, don’t want to scare anybody) and before you apply the mascara, you apply her clear wax pencil.  The wax thickens your eyebrows before the eyebrow mascara.  It’s not perfect but is somewhat effective.   Then I fill in a little with a taupe pencil.  

Halfbaked, almost everyone with Cicatricial (scarring) Alopecia has LPP (Lichen Planus Pilaris) on biopsy.  Don't ask me what LPP looks like under the microscope or what it even is.  Another misnomer, it is not lichen.  Thus, since most everyone has LPP, they should label it by location.  

I sometimes (though rarely) hear someone or their doc say they have "burned out", or are in remission.  However, I do not hear that they confirm it via biopsy.  I would say that is the only way to prove this freaky condition has halted.

CurlyK I look forward to meeting you at the CARF Conference!!  We will have to add our alias to our name tags.

HBW.,  there are basically 3 forms/types of LPP (Lichen planopilaris, sometimes referred to as Follicular Lichen Planus):- Classic LPP, Frontal Fibrosing Alopecia (FFA), & Graham-Little-Picardi-Lasseur syndrome/GLPLS. If you google LPP you will find explanation of differences, but essencially the three are distinguished mainly by the pattern of involvement and location. When I was referring to going to bed & 4getting about it for 7 or 8 hours, because I mostly seem to sleep pretty well, so it is a relief not having to think about it, & I don't know, I just find in early evening I can relax, glass of red wine helps (I only have 2 or 3 glasses about 3 nights/week - Fri, Sat, & Sun, generally, unless I feel the need during the week, then I'll have one or two, it's not 'set in stone'). I just find that as it continues to creep back from front & templet, sides, all around my ears, and also diffusely all over, that facing it first thing in morning is the worst, espec when I have no eyebrows left (will get around to microblading, just haven't, for various reasons, done so yet)....as my hair generally is naturally wavy/curly it really needs to be either sprayed or wet in shower for curls to spring back (which does help to a certain extent cover the loss a little more) as it tends to flatten out a bit overnight... I am pretty gentle, don't muck around with it much, just let it dry naturally....From last year around mid March,out of the blue I had a flare of the horrible pain, tenderness & lots of those minute sore papules over many areas of my scalp, the sensory symptons are bizarre & hard to describe to someone who hasn't experienced it but they are ghastly, horrible feelings...it is only in the last month I've found that it has eased off a lot....was pretty bad for about first 6 to 8 months, when I started  to get less & less of the sore papules over nxt 4 to 6 mths. I had a lot of these awful sensations for the first 18mths (from early Oct'12)when I first felt them along with the sudden hair loss, then from about March2014 to around March2015 the scalp sensations slowly eased off, & from M2015 to March 2017 I coped so much better that I actually stopped the anti-anx/depressants, weaned myself off them, for almost 2 years....(I knew it was still active as my scalp still had some slight itching but sensations overall were much more subdued, & I had continued hairloss from front, but it was very very slow)......then BAM, mid March 2017, the flare-up........no rhyme or reason for me, cannot relate it to any extra stress than normal day to day.....Nothing has ever stressed me out more than the symptons of this disorder, the weird pattern of hairloss is bad enough, but the eerie, painful scalp sensations, when so persistent, are a whole other thing to deal with, they can almost drive a person CRAZY.....!!! 

OK-new weirdness. I think I’ve developed an allergy to tomatoes. I’ve been tracking it for weeks now. Pizza sauce or marinade- I don’t eat tomatoes often because they aren’t kidney friendly but ya have to have pasta sometimes. About 5 minutes after eating, I develop a slightly swollen tongue with swollen bumps/lesions on both sides and it stings. My face gets really blotchy and the outer corners of my eyebrows hurt and they breakout in a red rash. 

WTH is this?!? Anyone suddenly develop an allergy that you’ve never had before FFA?

Hi illustr8r, that sucks... tomatoes are the basis to a lot of my diet..just grasping at straws but a friend of .y has rheumatoid arthritis ( another auto immune disordeR) .if she avoids night shades she is fine...eggplant, tomato es, capiscum)..wonder if it is related.its relentless this FFA, hope you find d an answer, 

I am with Jules. Mine is classic as they come FFA all the way. The loss I had become very extreme, a completely circular band with probably 4-5 inches of loss in front and a little less but still huge around my ears and now going up. My nape is starting too. And no pustules for me but my scalp itches like crazy and all my pieces itch like crazy as my scalp always was itchy from day one of this. Complete loss of brows now tattooed and all facial, arm and leg hair gone. I sleep very well too but I think it is because I am depressed. I never exercise any more (except for some walking as I have a dog) and have gained weight too. I cannot believe what a freak I am. I stayed with my grandchildren over the weekend and actually slept with my piece (so uncomfortable) so as not to frighten them. Hate this more than anything. I cannot reconcile at all. 

And listen, I know it’s tempting but don’t drink too much.

also getting my wig styled tonite. Hoping it doesn’t itch too much. I have been playing with it. Thought it would be more comfortable. Might look ok but nothing, nothing, nothing that you do for Camoflauge feels right, ever!!!! Beyond!

Wanted to let cubbiebku know wine has not adversely affected me in any way - after 6 years I am in remission and have lost very little hair since the onset - have a patch gone behind my left ear which is where it started and the band around my face - just had my derm appt - I chose to do no meds - I think managing our stress calms down whatever in our scalp has caused this - I have had tinnitutis on that side as well which also has become very quiet - I gave had some ear sensitivity which I find interesting as well as so many have spoken if that - it would be interesting to know if it had always occurred on the side with the most loss - obviously all those nerves are connected 

Joy, it is encouraging to hear from someone in remission!   Gives me hope.   I had steroid shots 10 days ago , however, I don’t see any change in thebumps or redness along my hairline.  Apparently it takes up to 5-6 weeks for the shots to finish the job.  

Joy, you are very lucky. Illust8r that sucks about the tomatoes. Jules thank you (and Wyobalance) for the explanations. 

When I first got this - or let's say first noticed it- I really didn't worry at all. I figured it would just stop, or grow back, or it was "nothing". My husband has Alopecia Areata and it looked nothing like his issues. 

I wish that "managing my stress" would help. I wish anything would help. 

Bubbalu I want to look into your eyebrow stuff too...

Sad in Chicago...I hope that I will get used to camouflage - I really do. But I hear you- having a thing on your head all the time is a "thing" that you feel. 

Boy, I wish I could go to the conference!! Do you think there will be t-shirts???  

I found this, Tomato allergy eczema. ... However, tomatoes (along with nuts) are considered irritants to those with eczema. Symptoms of allergy-related eczema will typically occur immediately following exposure to the allergen and may include recurrent rashes, severe itching, swelling, and redness.”

@Plf I agree it’s probably autoimmune related. I went to bed after writing that post last night with a swollen tongue and red face. It’s all better this morning. So strange. 

Sorry. .I'm trying so hard to deal with this and I apologize because I sound so negative sometimes but I hope it's ok if I just need to vent once in awhile here.

My nephew has been struggling with going bald and he decided to shave his head. I went to a family gathering tonight and he looks great. Everyone was complimenting him about how great he looked. I can't even imagine the same scenario with me. A low point for me. I've NEVER ever felt more unattractive, more self conscious, and more insecure now and in the future. . .

Got the wig. Easier?  Yes. Less self conscious?  Not really. Much lighter weight than pieces, but styling not the same and even though a fortune I feel wiggy and stupid. Like everyone is looking at me. But, again, although takes getting used to — like a band around your head—it is more comfortable. Just always disappointed. No matter what you try there is a downside. Hoping I get used to the look and enjoy the ease. Stay tuned. 

I has seen some women commenting on maybe stress being one of the factors. I am wondering that myself now. In 2010 my mom died.  6 months later I got a condition/illness called PMR (polymayalgia rheumatica), in 2016 I was helping my sister move out of state & help her cope with stressful situations of her own. Toward the end of helping her I came down with shingles,  now I am diagnosed In October 2017 with FFA.  My  hair was really coming out a lot before I decided to see the dermatologist.  She had me start with clobestatol & continue with women’s rogaine,  I haven’t had any hair loss now in a few months I think it’s been. I’ve stopped putting on anything with sunscreen on my face, I do use my foundation which has an SPF in it. So I’m not really sure what is going on. If it’s just slowed down, or stopped. I will be going back to the dermatologist in a couple weeks. I hope she doesn’t see any inflammation .  I am not going to take any drugs or injections whatever may happen either way.

Hi everyone, I haven't posted in awhile but I've been reading everyone's posts. I have a few questions because I think I have this but my dermatologist appointment isn't until Aug. 

When I look at my scalp I notice that the hairs all along my hairline are minaturizing and turning white. Then I can see how the hairline is receding backwards. Eventually those little white hairs fall out and nothing grows. So I have these single terminal hairs here and there. 

I also notice so much dandruff and gross yellow and white almost like plaque. It isn't noticable unless I take a pic using my macro camera. I don't have any red dots around hairs. My head is itchy on and off. 

When I take a picture from above you can see that my part is widest in the front and thicker in the back. So it is not following the pattern of female pattern baldness. 

I do have low iron and I was on a very restrictive diet for 6 years. I lost about 40 lbs and actually was borderline under weight. So my iron dropped to 10. It is now 23. 

I just feel I don't match any one thing perfectly. So I wondered if anyone else has hairloss like this. The hairs getting smaller and then losing colour and then just stopping all together. My worst areas are my sides above my ears. I can't wear my hair in a bun anymore because I look so bald on the sides. Ugh. 

;hello for me it does not look like fibrosing alopecia. There is no miniaturization during this alopecia. It looks like androgenic alopecia with maybe a telogen effluvium. Yellow plaques may be seborrheic dermatitis

RAOULA, thank you for your response. It is so confusing. I do notice the scaling and plaque all over my scalp. But yes I keep going back and forth on the androgenic alopecia and LPP. I guess my confusion is that the hairloss is mostly at the front, on my sides, above my ears. Maybe it is thinner all over and just more noticable on my sides because my hair there has always been thin.

My scalp has started itching again. I wish my appointmemt was earlier but I guess in the long run it doesn't matter a whole lot. :( 

I will post a picture. 

I've taken a real hit lately.  Probably a full inch.  So depressing.  The last photo is two years ago.  I am 60 years old.  Just needed to share today.  I sure hope all of you out there are doing better than I am regarding hair loss!

I definitely think of androgenic alopecia and telogen effluvium. White plates are everywhere? You lose your eyebrows? Arms?
Do you have areas without hair? I too thought I had this disease, and I went to see a professor in dermatology, who gave me a biopsy to reassure me and that to confirm what he thought: androgenic alopecia.
After I lost more hair on one side, a little less on the other but I had plenty of vellus hair among my hair terminal.
My dematologist specializes in the scalp and he told me that when the hair falls, it no longer grows: there is no miniaturization. After, we can have 2: fibrosing alopecia in androgenic alopecia but ask a dermatologist earlier to reassure you.

Hi Raoula,  I have my eyebrows and no hairloss anywhere else. And yes I do have lots of vellus hairs. You can see my hairline outlined with them. But not much as far as terminal hairs. I do have areas within my sides that are smooth with no hair follicules growing. I'll see if I can find a picture and post it. There is build up of scaling all over my scalp. Not just at the sides so I thought it was a type of dermatitis or candida at first. It was extremely itchy and painful in the shower. When I wash with nizoral the itching goes away. But as soon as my hair is greasy it gets really itchy. 

There is a pic below, I know it is ridiculous but its from 6 years ago showing how much thicker my sides were. 

Sorry all for bombarding you with pics! Does it look 

Ike FFA? 

Hi Lynn55  

i wouldn’t like to say categorically but it doesn’t look the same as my FFA.  You don’t seem to have a band of hair loss, or the ‘moth eaten’ appearance of FFA or patches of loss.  Do you think it could be generalised thinning? 

Christi Q and Lynn55,

You are both beautiful women and I am sad we are in this sorry club together.  For what it's worth, it is somewhat comforting to know I'm not in this alone, thank you for being brave and posting pics.  My FFA has not receded to the point other people probably notice but I certainly do notice.  My bangs just don't hang right.  And it's the nagging worry that keeps me uptight - how far back will it go?  I'm trying to just breathe, take one day at a time and adjust.  Also, I am all in on the Ketosis diet which is supposed to be good for a lot of things like auto immune, diabetes, etc.  The inflammation has lessened so maybe it's the diet or the steroid injections.  And, I've lost 8 lbs eating lots of fat!  There is a great book explaining how it works and how to get started.  Eat Rich, Live Long.

Hi Everyone,

I have not been able to post comments for a few weeks, but I have enjoyed reading your posts and knowing that we are all here for each other.

I saw the Dermatologist again yesterday.  She is convinced that my hair has not receded any further since the last time that I saw her ? neatly a year ago. I did not agree with her, however, she measured from my eyebrows to my hair line and said that the measurements were the same as last time! She used a ruler - so not very scientific - a tape measure that could curve over my forehead would have been more accurate. :(

The lady, who is attending the Carf Conference (I think it might be Curly K), please would ask if the Specialists have heard the results from the Research that was carried out at St Guy’s Hospital in London in December 2016/early 2017.  Apparently, they are waiting for the results to be published in one of the Medical Journals. It will be interesting learn about that the research turned up.

Best Wishes to everyone - try to keep smiling.

xOx

@Lynn555 Your sides look like mine, thinning. The "moth eaten" look is along my widow's peak. Do you have the weird smooth white skin along your forehead starting about an inch from your hairline? That's the scarring and I've noticed lately that it feels numb.

@BubbaLu I've had bangs my whole like and mine no longer lay the same either. Drives me crazy. Very wispy. My temples are far back so the gaps on either side is noticeable in the friggin' wind. My "good hair" is pushed forward to give me sideburns for a pixie cut. I'm managing but wish I didn't have to-stupid disease.

@Airam Last time I was at the dermatologist I actually had improvement. I gained 1/4 inch and the hair had covered where she done the biopsy. I am doing better than when I was first diagnosed.*knock wood* I've had this mess a lot longer before I was diagnosed...not burn out but maybe it's going to be way slower going than before. Who knows-and that's the problem. *sigh*

I live 45 minutes outside of Philadelphia and considered going but it’s $250!! Ridiculous

@Illustr8r,

No I don't have any smooth white skin or numbness. I just have lots of vellus hairs. And then in my sides there seems to be follicules that are empty or have smaller than normal hairs. It is weird. 

Airam, yes I am attending the CARF conference. I’ll be going back through these posts to create a list of questions. Hopefully I can bring back some answers. 

I had my hair “done” ten days ago. Where they take my bonded piece off, clean it, my scalp, and then re-adhere it. I took pics with it off to have a record of what has happened. I’m not feeling brave enough to post here yet. It’s rather sobering...

Beez, yes $250 is a chunk for the CARF Conference, and more so for us that add air travel.  

However, most professional conferences cost $500+ and don't include all the meals.

The docs presenting at the CARF conference (I count at least 12) are donating their time, which is almost unheard of.

I'm hoping the conference will be worth the cost, and expect it will as many of the docs are FFA experts.

Here's the agenda again for those that may have missed it.

(this agenda does not show the Friday night 6/8 reception nor the Sunday after lunch Show & Share Social)

http://www.carfintl.org/_docs/Patient_Doctor_Conference_2018_Progra...

The Sunday also looks interesting - sessions on how to live with hair loss.

I look forward to hearing feedback from people who are attending. 

xOx

Hi, Lynn555. Here's an article about how FFA can have different presentations. There's the classic presentation with the frontal band at the top and sides of the hair line, there's the frontal band loss, along with diffuse loss), and another kind they call "pseudo fringe." I'm not sure if any of these match what you're experiencing, but I think it's important to note that FFA doesn't always look exactly the same for everyone. I've attached the pdf.Moreno-Arrones_et_al-2017-Classification%20System.pdf

Who else is going to the conference? 

I agree that $250 is a great price on a conference. I go to conferences for work that cost upwards or over $1,000 that don’t include meals. I jumped on this right away as I want to hear from doctors who really know this type of hair loss. 

@CurlyK I think dr should consider now including the risk of FFA when women enter peri menopause. I started to have hair loss symptoms around age 48 that were dismissed and continued to be dismissed until age 53. The infamous “as we age” response. If it’s so important to get treated early then women need to know about it and dr need to be enlightened to take this sort of hair loss seriously.

Maybe you can ask if the medical powers that be could include this type of hairloss with the onset of menopause. It would expand awareness of the disease and I bet it’s not as rare as it seems unfortunately.

Hi, Haven't posted much as of late, kind of bummed about my disappearing sides hair line. CurlyK Wondering what type of business applies hair pieces? Wig salons or type of specialty shop?. I find shops that do extensions, is this where you have yours done? For CurlyK and anyone else, How does the nape of neck look? 

Hi @Anon at the moment I have a clear dividing line between good hair from the middle back and thinning hair from the middle forward. The nape of my hair feels/looks like it should with no thin spots...so far.