My hairstylist was encouraging today, saw new growth in the unscarred areas and doesn’t think I’ve had any new loss. She was impressed with how much hair I had so it’s growing well thanks to Castor Oil and my other oil. She said right now is a bad time for hair. It’s winter and with the furnace running more the air is dry and it affects your hair. So, I went blonder to hide the gray and to made my bangs appear thicker since they match my skin more. Oh the things we do...

@Kandy15 I’m waiting for my haircut and a lady with salt and pepper hair is there. She is older than me-big thick bouncing hair. Why her and not me?!? It’s a common thing. I look at ladies my age all the time. Do they have their eyebrows? Is that a pencil brow? Oh, she’s got microbladed brows too...how’s her hairline? Her hairline looks like mine from the side. Does she know about FFA?

The torturous internal dialog about hair...some days I don’t think about it and other times it’s 24/7. Up, down...not sure if that ever goes away no matter how accepting of the condition you are. Hang in there....(((Hugs)))

illustr8r, I'm glad you got happy results from your hairdresser!  

Kandy15 & illustr8r, I am constantly checking out other women's hair and brows and think how lucky are they and most of them don't even know it :-(  

Kandy15, I hope your day is better today, I really do- days like this are so hard, I've been there and to put it bluntly it sucks.

Lots of hugs to you  :-) 

Yeah, I get the bad scary places too. These days I would like to be able to explore getting injections locally which seems less invasive to me than Finasteride, etc., but I don't live in Paris where they would do this for me. 

I too envy women who have HAIR. The only consolation - when my hair goes and I am wearing hair pieces, my hair will suddenly look amazing ; ). 

I am going to make another appointment at the Dr's in Paris, and maybe we can try something else- again if the injections don't work, or if they leave strange marks, well I will be needing a hairpiece no matter what anyway...

Bisous, and feel better everyone. It's Sunday : ). 

Hi ladies, I'm having a rough day too. It's impossible for me not to feel down when I see other women my age who don't have to deal with this. They have no idea how lucky they are. I've always been a positive take charge confidant healthy person but it's so discouraging to think about how different I look and feel now. I try to forget about it but every time I see myself in the mirror I want to cry. 

For me my progressive receding hairline is only part of my misery. It's hard enough getting older but I feel like I've also aged dramatically. I miss my eyebrows SO much, I miss my smooth skin, I hate that I now have more and more thinning on the top of my head so in the light my shiny white scalp is on full display. . .I feel so naked and exposed.

For so many of you helper hair is a great option and a light at the end of the tunnel but my scalp and forehead are so sensitive that I can't imagine how I would ever be able to handle that? I don't know what I'll do when I get to that point but it makes me frightened and anxious.

I have some wonderful group vacations coming up but I'm already a mess thinking about how I will handle the inevitable windy days around everyone. On one of the trips I'll be with my sister who is one of those ladies we look at with envy. I'll try to do everything I can with makeup, powders, hats, etc but it doesn't change the constant fear that I will be exposed on a windy day and they'll see how ugly I really am. It's awful what this condition can do to a person.

I'm going to see my dermatologist this week but I'm not sure why because there don't seem the answers we are all desperate to hear but I have to do something.

And Fri I'm going back to have my eyebrows microbaded again. I had some scarring last time so I dread it. But I'm hopeful it will give me back a little of my face again.

I read your thoughts and think about you all everyday. As Kandy15 said I am so thankful to have a place to put down my thoughts once in awhile without being judged. 

Onward for now. Thanks for listening. I wish I could give you all a huge hug!

Last week I had my eyebrows redone.  I visited a new cosmetic tattooist who works out of a plastic surgeon’s office.  The fee was double what I have been paying the last few years, but I am hoping that it will last longer than the 6 to 8 months I experienced previously. I showed her my scalp, and we decided on medical grade tattooing to fill in the bald areas along my temples.  I am hoping that this will allow me to pull my hair back in a clip and not dread the windy days.  She thinks it will take 2 to 3 visits to achieve the results I want.  I’ll keep you posted.  

PamW- is it tattooing or microblading? I'm going to ask about it on Fri when I go in for my eyebrows. I would consider doing it along my temples but also possibly in front of my ears. I worry it could cause more loss though

https://reader.elsevier.com/reader/sd/pii/S2352647518300704?token=A...

I hope my link works to the article cited on FB. 

It distinguishes LLP from simple FFA - and I *still* can't figure out which I have - it emphasizes that if I have FFA only, I should have lost my eyebrows, which I haven't. However, if I had LLP, I'd have patchy hair loss, which I don't. As I look at my forearms right now, they are probably less covered in blond hair than they used to be. So I guess I'm more in line with FFA. 

Erika - I am impressed with your light therapy. I don't have the money to purchase one of those things - the only thing I saw offered here is downtown and you have to pay for the sessions, and I don't see myself going down there every day...

Sooo... all this to say that it's frustrating to feel like I'm not able to get all the treatment I'd like for this problem (though I'm sure I'm far from the only one in this situation), and also feeling ambivalent and kind of resentful about having to do *any$ damn thing at all... because I SHOULDN'T BE LOSING MY DAMN HAIR. Ouf glad I got that out ; ). 

Have a decent week, and keep your hair on your head. I'm certainly not - the whole house has curly strands in all its corners. Like a curly hairy nest. Lovely image. 

Annie May, my eyebrows are tattooed because once you have tattoos, you cannot micro blade.  However, she did hair strokes.  

I asked her what to call what she did to my scalp, and she said it is medical grade tattooing.  She used two methods; pixelating and hair strokes.  I was also worried about more damage, but the areas where she worked haven’t had hair for years.  If I push the hair up or behind my ears, you just see brown, not bald.  She said bald men do it all the time.  

Oh it must have been a bad hair weekend all round.  I no longer know what to write... apart from thank you all for ‘being’ there.  My sides perilously close to my ‘unattractive’ ears now.  It’s like life carries on in but hair Kiss is fast forward motion.  Boo flipping hoo!  I try so hard to stay positive about my hair and try to be grateful I at least still have some.  Helper hair keeps me going on one level but why oh why?!?  Anyway this is the best it’s going to be....

Did you know the 11th hair loss research congress takes place in Barcelona this year (April) ?  I recognised most of the global list of speakers in the world of dermatology from my constant internet research.  I am wondering about applying to attend??  Imagine... I could be ‘the real life’ example of this awful condition...haha!

Oh for some magic solutions.....  take care everyone  

Ps hair Kiss (=hair loss) my typo, but this website is so cumbersome !! 

Halfbakedwho,  I read the article you attached and I guess it would make sense if I were a doctor but it was very over my head.  I was diagnosed with LPP 3 years ago when I had a rash all around my hairline.  The doc did the biopsy and that's what it came back as.  I was put on doxy and clobetesol but lost my hair along the sides of my head from my temples to my ears anyway.  I am one of the ones that hates when the wind blows my hair back for all to see the baldness.  When it's a calm day I can keep it hidden.  My front hairline is now being attacked right at my forehead.  I kind of always saw the thinning there but never had the rash until this past November.  The dermatologist told me I have FFA now which is the same as LPP.  I honestly don't know if any of these derms know what they are talking about or how to even direct us to something that could help.  That's another reason I am so thankful for his site because we can all bounce ideas off of one another and see what we are all doing to try to have some sort of success in a particular treatment.  

Erika B, I looked at your pictures and the hair loss comparison is encouraging.  Please keep us posted as to how it is going with your treatments.  

Big hugs to all.

Check out the CARF website.  There are options available for many of us so that we don't need to fear the wind.  CARF will be adding more options in the future.   http://www.carfintl.org/

Thanks so much for directing me to the CARF website.  I feel so much better as I read about the helper hair ideas and even ordered some concealer from Derm Match.  I still have plenty of hair - just not where I need it in the front so I am excited to have options that I didn't know existed.  I wish I had joined this group 3 years ago but I'm here now and I appreciate you all very much.

Thanks for the reminder re carf website...I find reading info at different points throughout my hair loss journey helpful.  It’s strange though, despite everything I have come to know about this wretched condition and daily progression... I STILL stupidly think that my hair loss will stabilise soon and perhaps even grow back!! Just how ridiculous am I?!? 

Hi afraid, I'm with you.  I keep hoping that my FFA is going to burn out as they say happens!!  But I don't know if anyone on this site has actually said that this has happened to them!  I'm in the denial camp, trying not to constantly check out slowly receding frontal hair line. l applaud all you lovely ladies, appreciate your wonderful sense of humour dispite this horrible affliction...fingers crossed for a break through in treatment.

Thanks Plf for your insight and support x

Haha!  I thought of you all yesterday as I embarked on another self help/ denial/ magic wand/ distraction technique.... as I headed off to see an ‘acupuncturist’... by chance i’d overheard a colleague referring to her friend whose hair had started to ‘grow back’ following TCM intervention!! I have googled and of course there is no evidence that this rare(?!) type of alopecia responds to acupuncture (other types do...of course!) but well... what’s to lose ???  The progression to being able to sit in front of a complete stranger and say I have alopecia without breaking into sobs is surely something..

here’s hoping!!

I often wonder if my FFA will burn out, and if so, could it be this year?  I would love to hear from someone whose FFA did burn out and what the symptoms were as it burned out.   However, those who have had this glorious event happen no longer need this site to give them guidance and/or hope.  

If my itchy hairline journey were  over I would probably go on my way and not check in here anymore.  

I am so thankful for the support and the ideas that I have gotten from this site.  I have felt so alone about this condition - there are no support groups in my area, so to find this site has been very comforting.  My hair stylist has been doing hair for 35 years and told me that she has never seen any of her clients with this condition.  She always expresses her condolences to me when I go to her because she sees the loss.  I used to love getting my hair colored and cut but now I dread it.  I feel like all of the other clients in the salon are staring at me but trying not to.  Ick!

I pray that someone, some way, some how will find a cure for this stupid FFA and LPP.  We all hate it and can't understand how in the world we have been targeted by it.  

I keep taking the hydroxychloroquine, follow the gluten, dairy and sugar free diet ( I have cheated a little with adding cream to my coffee and eating gluten free cookies that have some sugar in them ) apply aloe vera gel to my diseased hairline at the forehead in the morning and CBD oil at night.  I am determined to fight to keep what hair I have.  I also have a plan in place if/when the time comes for helper hair in the form of bonded hair. 

I am not on Facebook so I really appreciate this site.  I know that so many have gone onto the Facebook FFA support group which is wonderful because we all need to do what it takes to find the support that we need from one another.

Have a wonderful weekend everyone.  Big hugs to all.  

I am feeling good about my hair right now. I haven’t noticed any hair loss recently (few months) . I have made sure I put nothing on my skin that has those 3 sunscreen ingredients. Oxybenzone, avobenzone & octinoxate. I’ve also started using Honeyskin shampoo & conditioner. (Love the feeling of my hair)  Fragrance, sulfate & paraben free. I wash my hair every other day. I use rogaine 5% for women everyday & clobestatol 2x week. Who knows how long this will last though.  It seems like at the middle -end of summer I start with more hair loss.   Then stabilizes the rest of the seasons.

Hello lovely ladies, I read this website pretty much daily but do not comment very often. How I can relate to each and every one of you and hope the best for all of us.  

I have gone gluten free, milk free and try sugar free. I have cheated on the sugar free and darned if the itching returns when I have sugar.  

I have given up the oxybenzone, avobenzone and octinoxate SPF products and urge anyone who has not done that to do so immediately.  Also to not use shampoo or conditioner with ultra violet filters or benzene or any ingedient with a “Benz” derivitive. Benezene kills coral reefs.  Why do we use it in shampoos, conditioners and body soaps?  For decades, I unfortunately used these ingredients in moisturizers, foundation, sunscreen, soap, body wash, shampoo and conditioner.  Wish I had been smart enough to not use products with these ingredients.  Where is the FDA when we know it kills coral reefs?  I think we should all contact our senators to push the FDA to investigate the use of these ingredients.

Donna, I have never heard of the Honeyskin shampoo and conditioner. Is Honeyskin a brand name?

My love and thoughts are with all of you as we journey through this.  I wish none of us had to go through this.

Toby - Honeyskin is a brand name. I found it on Amazon

Donna and Toby, thanks for this valuable information.  I just reviewed the make up and hair products that I use and looked them up on the EWG.  Found out that my shampoo and conditioner have Benzoate so since it starts with Benz, I'm not going to use it anymore.  I use Cover Girl make-up and I couldn't really tell if it had SPF in it so I looked up some SPF free make-up.  I was wondering if you could tell me what foundation and/or powder make-up you use that is safe.  It looks like Almay may have one as well as Estee Lauder.  Also, what about coloring your hair?  I picked up something today from Whole Foods but haven't checked out the ingredients yet.

I appreciate the guidance. 

Since being diagnosed with FFA, one of the 1st things I did was google harmful chemicals in skin care, make-up, and hair products.  I also found the EWG website and search that site for favorably rated cosmetics, soaps and conditioners. I also do not buy anything with SPF from any “Benz” derivitive. I ended up ordering things on line using several different companies.  As per the EWG website without Benz derivatives, I get eyebrow pencil,  lip gloss, blush and eye cream from Beauty Counter.  Mascara from Crunchi.  Some Shea moisture shampoo and conditioner and hair spray/ gel.  Nourish Organics facial cleanser and moisturizer (Target).  I have not really found a foundation that I like. I do not wear powder.

i used to be a person that would wear make-up every day. Now, I tell myself I will look better the longer I can keep some of my hair than wearing make-up for a day.

one of the wonderful women on this site shared an article about the SPF in skin care and cosmetics and ultraviolet filters including benzene in shampoos and conditioners as being the link between FFA and LPP.  My dermatologist said it is not proven that SPF causes this, but it is the leading thought of what causes it. 

I don’t think eliminating these chemicals will bring our lost hair back, but I have to do everything that may prevent my hair loss from getting worse and hopefully going in remission. To me, just having this disease tells my my body is sensitive to these chemicals that are in all these products.

best of luck!

Kandy - I use Maybelline dream velvet foundation & dream satin.  They don’t have any of those 3 oxybenzone, avobenzone, octinoxate in them that I can read. I also just bought Boots No7 primer which doesn’t have those in it.  I haven’t checked my mascara or eyeshadow.  I use seldom. I’m not fanatic about my make up but if I can avoid as much as possible of these ingredients I will. I do use cetaphil as my all over moisturizer.

Hi, 

linking to to the current thread...interestingly I pushed my dermatologist to refer me for skin patch testing in December and the results found I was allergic to perfume/fragrance.  The common culprits are limonene and linaloon (which I’d not noted previously) these chemicals are found in millions of products, including expensive or ‘natural’ products.  I can forward information from the dermatologist if helpful to anyone.   I had already moved towards paraben and sulphate free and my current shampoo listed 10 ingredients it proudly did not include but it does include limonene.     I have stopped spraying perfume on my skin and the rash on my neck has disappeared.  I had no idea I was allergic to perfume. On reflection I think my sensitivity to fragrance began when I was going through IVF.  The TCM guy I saw the other day said he had encountered many patients with hair loss due to IVF (ivf + stress?). I guess a range of factors.  

Ps such is the irony of this silly situation I was bought  a beautiful bottle of perfume (£200!!!!!) for Christmas... as a distraction to major hair loss  2 days before being told I was allergic to perfume...haha!!! 

I also had the patch testing done, and I am allergic to fragrance and perfumes.  I take my own soap with me whenever I travel!  Very careful about lotions, laundry detergents and soaps.  

Wow, this is all so interesting and helpful.  Just yesterday I bought a hair color and hairspray from Whole Foods, thinking I could trust those products.  After reading these comments I looked at the ingredients and they both have something called Benzoate, so they are going back.  A few weeks ago I found a company called Be Green and ordered a facial wash, day cream, night cream, deodorant and body lotion.  All of the products are rated as 1 on the EWG as safe so I'm heading in the right direction with the wonderful guidance from you ladies.  Now to find hair color that is safe and hairspray too.  Gotta have it since my hair roots get gray in 4 weeks and my limp, no body hair needs the hairspray to look decent.  Oh to have my full head of glorious hair back instead of limp straw.....

But we keep on fighting to keep what is ours.

I’ve never been officially tested but I’m highly reactive to perfumes in creams and make up. A few years ago I bought some make up and neck cream from a friend who was doing one of those,”come to my house and buy stuff” parties. I cannot remember the brand name though! Anyway, after 2 weeks of using the neck cream my skin looked like crepe paper and I itched terribly all over. I had to go to the dr and he gave me a round of steroid pills. Was this a trigger for things to come?

I use the same foundation as Donna does and I also use Beautycounter. 

Younique was the brand name. At midnight, I remembered! LOL!! :)

Haha illustr8r, that is usually when I remember stuff too!  

A couple of years ago I tried a moisturizer with Retin A.  I used it only once or twice and my neck turned bright red, blotchy and really itchy- it was so bad I ended up having to go to the doctor for help.  Since then it's been no more retin A for me :-( 

Oh and to add to that, I can't use any perfumed or 'strong" soaps/lotions on my hands/forearms as I turn into a scratching maniac it affects me that badly- again red and splotchy and beyond itchy.  The rest of me is fine, just my hands/forearms are like that, weird. 

Ladies, 

I'm pretty new to this forum and I wanted to ask you all something. I am not on Facebook, only on this site as a member.  I recently had a private message sent to me through the comment section from someone who told me that she had something to tell me that she couldn't post on the regular comment wall because it wasn't private.  She read my profile and said she felt the need to reach out to me.  Her member name is not one that I could find that has ever commented on this comment wall before and I have gone way back to when this group was started.  Just wondering if anyone else has had someone reach out to them that way.  I haven't responded because I'm just unsure about it.    

Hi Kandy15,

im not on FB either so really appreciate all info shared here.

A little while ago I had a similar request which I foolishly replied to & it was someone requesting money!  I obviously did not oblige, but it did highlight how desperate and vulnerable I was in terms of thinking this person was about to share valuable information regarding a potential magical solution for for hair problem!! 

Wow! Unbelievable!  I thought the request was odd so I am very happy that you shared your story.  I have gone back to look at almost all of the comments on this blog.  It has been such a big help to me because I am an emotional mess just worrying about what is to come.  I know I have to just handle it and I will.  I'm just trying to come to terms with it.  Like the CARF website says, Not knowing is the hardest part.

I have read your comments along your journey and I appreciate your brave story, Afraid.   

Thanks to everyone for being here.

Kandy 15, I can totally relate to your emotional feelings, living with the chronic symptons of this condition, as I'm sure many others here can.  I try so so hard to stay strong, but find the symptons can be so challenging,; when the offered treatments are so hit & miss & mostly ineffective and it seems for many to be one sympt8n after another, not knowint each day, week, month, year, what's in stall ahead; how we'll manage to keep adapting to the changes in the loss, other symptoms, side effects from harsh drugs, the dilema/quandry of whether to take drugs/reatments or NOT..... well yep it can be "all consuming" .... though I am so GRATEFUL for this site/forum, & all th beautiful ladies here expressing their feelings etc, as I'd probably otherwise (6&half years down track now) with  this b#s@a#d condition, possibly gone a liitle 'crazy' by now.... it validates what I'm feeling, experiencing, the negativde psychological effects on your peace of mind & that you're not the only person in the world who feels the way you do trying to livè a happy life with a condition that can sometimes make that really HARD ... sorry for the vent, but necessary today .... sorry you had to join this club but hugs to you &all of you here & thx for listening  xx

Ps Kandy15  I noticed that comment on your page reaching out to you & think you're right it looks a little 'sus' to me ... probably best to ignore it .... beats me how some people can make comments when not being a member .... guess there are always intruders who somehow know how to breakinto websites without permission !?

Hi Lu, just a quick question, when you had your appointment with Sinclair dermatology did the push the kerestase hair product range they have on their site, that supposedly stimulates the hair follicles

I am so upset.  I was diagnosed with FFA 5 years ago.  The doctor  prescribed doxycycline + Desonide cream for close to a year.  I was one of the fortunate people who responded to the treatment.  I had "gotten over" it emotionally and physically.  Now I am losing what was left of my eyebrows and my forehead around my hairline and scalp are driving me crazy again with itching.  My dermatologist has moved and I can't get an appointment at my clinic with another dermatologist until late March.  What really complicates this is that I had bladder cancer about 9 years ago and have been kept cancer-free with periodic immunotherapy treatments.  I have a 3-week series beginning the end of February.  The FFA started after one of the bladder cancer treatments went amiss and I am so scared of what is going on.  I don't want to lose my bladder and I don't want to lose my hair either!  Has anyone else responded to doxycycline and then relapsed?  Did you respond the second time?

I saw this posted on the FFA site on Facebook today. I have never heard of this treatment before so I thought I’d copy/paste it here for those who aren’t on FB. The lady said that the medicine is over the counter and she sprays it on her hands and rubs it into her scalp.

****

I posted a while back about a doc appt in NYC. I saw my doc at Columbia again today. She's added an allergy treatment nasal spray that I will use on the redness in my scalp.

NasalCrom allergy spray.

Findings from the latest research show that many FFA people have a strong presence of mast cells. "A mast cell (also known as a mastocyte or a labrocyte[1]) is a type of white blood cell that contains many granules rich in histamine and heparin."

Hi Mary,  I'm sorry this has flared up again, I have never taken doxycycline so I don't know much about that.  But I just wanted to say I'm hoping it will all calm down again for you and that your appointment will go well when it finally comes around- March seems so far away but February is a short month so it will be here quickly!

illustr8r - how interesting!  Nasal spray on the scalp?  I wonder if the antihistamine would help with the histamine which would cause the itching right?

I am now showing my glaring ignorance about histamines!!  But if this works, it would be wonderful :-)  I'm off to google now, though I doubt if there is much out there about this and thank you for posting/sharing as I am not on FB!

Mary, I was officially diagnosed through biopsy in April 2016 although I had developed a bad rash all around my hairline from one ear to the forehead to the other ear before I was told it was LPP.  I went to 3 doctors in 9 months, including the dermatologist who finally did the biopsy.  I was told it was just a rash by all of them and to use over the counter cortisone cream, which didn't help.  The dermatologist prescribed doxycycline and clobetasol in April 2016.  The doxy was 100 mg twice a day and the clobetasol was just once a week. I think I had been ignored for so long that it may have been too late because I lost 1 - 2 inches of hair from my temples to my ears. ( Hate it when the wind blows ).  Fortunately my forehead hairline was not disturbed at that time.  The hair loss was only at the sides and  seemed to stop after about a year so the doc stopped the meds and told me I wouldn't lose any more hair.  I was so happy and went on my merry little way, enjoying life. 

Then this last November I got the dreaded rash on my forehead and it was gobbling up my hairline at a fast pace.  I went to a different dermatologist because the other one moved away.  She put me on doxy again but only 50 mg once a day and tacrolimus ointment which I got no results from.  I'm now on hydroxychloroquine for about 4 weeks now and CBD oil on the hairline that doesn't seem to be working either.  Changed my diet to gluten free with very minimal dairy and sugar only if I sneak a gluten free cookie. I keep seeing new disease right behind the effected hair/bald parts that is red and looks like tiny little black dots, probably where the follicles are dying.   Yesterday I started having the burning and itching all over my scalp that I have only had at the beginning of all of this.  New fresh hell to contend with.  UGH!  I hate this stupid disease.  But I want to fight and do whatever it takes to try to keep the hair I have.  

My new dermatologist is a PA and I thought that with her being a woman she would be more concerned but she's not.  She told me that a lot of her patients who have hair loss problems just wear wigs or hairpieces and get on with life and she suggested that I do just that.  

So frustrating, all of this.

Hugs to all of the beautiful ladies who check in here.

Key West City Commission voted yesterday to ban sunscreens with oxybenzone or octinoxate to protect the coral reef around the Keys. Hawaii and Palau have similar bans.  Interesting to see this article on the Web after our discussion of these chemicals in sunscreen.  Here is the link.  NPR quoted the Miami Herald.

https://www.npr.org/2019/02/06/691913378/key-west-votes-to-ban-popu... 

Great news Elizabeth. So glad to see Key West stepping up to the plate to get oxybenzone and octinoxare out of sunscreen we put on our bodies. Now if only the rest of Florida will do likewise.

Florida resident!

Thanks Elizabeth W, now if only Australia would follow suit!

Hi Plf,

Nope, they didn’t push anything .. even when I asked if I should be using any special product.

How did your dermatologist appointment go?

Thanks Lu, haven't got to derm yet, busily dealing with r/O bcc'sfrom my face, too much sun exposure as a kid..and now all the scary talk about not using sunscreen!!  Hairline seems to have stabilised but then again.may be just deniel.  Has anyone in Australia found a good sunscreen with minimal chemicals?

Hello all,

Has anyone tried  treatments to purify and detoxify their scalp and hair funnels by eliminating impurities and sebum that block the vital development of their hair?  I went to a hair restoration salon yesterday for a consultation about bonded hair and the owner recommended that I try this detox treatment first.  She seems to think that it could help me keep what I have for another 5 years or so.  I just sent her my "journey" of dealing with LPP and FFA for the last 3 years along with questions.  She works under a trichologist and will forward my email to her for review.  The salon owner has been doing hair restoration for 25 years, but she was not familiar  with the terms LPP or FAA but was familiar with cicatricial alopecias.

I am in the States right now. Is it true, Illust8r, that I should get nasal spray? 

My mom has noticed the baldness - before she kept telling me over the phone that it couldn’t be as bad as I thought, etc. Now she tells me to pull my hair back off my face, then she says « oh no you can’t - it looks weird - what are all those veins there too? » So I can’t pull my hair back and wearing it pushed forward looks a bit odd - I am in « I don’t know how to wear my hair » territory now. It’s still not noticeable per se, but I can’t wear my hair in a way that would be flattering either (which would be pulled off my face a bit). 

OK I am in major jet-lag modee since it’s 5h30 PM States-side and 11h30PM my side -so if I am a bit rambly be nice : )

Please send me your ideas of over-the-counter things that help you that I could find here. 

Mary - I have doxycycline that I constantly forget to take. I really only use topical treatments. I am just so wary of putting powerful meds in my system on a consistent basis. I am on an antidepressant that I will need to take forever, and that is plenty. I am sorry you went through so much illness - but I would prioritize my bladder over my hair (as one would, as you probably will too). Take good care. 

@HBW I haven’t tried the NasalSpray on my scalp yet. I will try it at some point. It’s is an interesting treatment to consider and less harmful I’d think than taking the immune suppressing drugs they like to prescribe. The lady who posted that hasn’t reported back yet on how it’s working. 

Enjoy your stay in the states! :)