Thanks CurlyK.  This helps so much in just trying to figure out how to move forward in order to look and feel somewhat normal.   

Kandy15 yes, that is the thing, to feel normal :-(  I'm a little down because today is hair cut/color day- it is always a shock to see my hair after being freshly washed and under the bright lights at the salon.

 I used to go in and get a trim or color or a whole new haircut and be quite easy and happy about it and look forward to it- now I dread it and go in with a phone full of photos to show her how I want the 'sideburns' cut, how I want the back cut, how to do the bangs etc.  because it is all smoke and mirrors to disguise the loss!  To make it even worse I started a new workout program at the gym and it is hard, so I sweat, a LOT and I'm so embarrassed about my hair- I spend half the time looking in the mirror praying that it is not pushed too far back from my forehead or the sides are still covered.  

I feel like I need to do these workouts and really anything where I sweat and/or my hair would be blown around or wear a helmet or whatever.  It all needs to be done now before the loss is so bad that I can't hide it.  Sort of like live like you were dying, it is actually a lot like that- I feel like I am living until a part of me dies, the old me with real hair dies and then it will be a completely different life and lifestyle because of my stupid hair or lack of and stupid FFA.  

Hi all, sorry about being a real Debbie Downer yesterday!  My hair actually came out pretty good and she cut it in a way that it will (hopefully) still look normal while running around the gym and sweating.  She had been razor cutting it and using these scissors that do layers and my hair does not like that- it puffs & frizzes up like crazy and she switched back to choppy layers done by scissors and that should make a difference and make it not a frizzy mess. 

P.S. Jules Australia I'm going to order the Moo Goo travel pack today and see how I like their products, thanks again for posting about the company!

Minter, Never ever feel sorry about having a down day.  We all understand.  We all have those depressed feelings from time to time.  For me I think it's because I get so anxious just wondering what the future holds for me with this disease and when I will be in a position to seek helper hair.  Will it be next month, next year, 5 years from now?  It's the not knowing that is the hardest part of being able to cope.  

I'm so happy that your haircut turned out cute and you feel better about yourself.  I too used to look so forward to the pampering of going to the salon for a color and cut.  Now I am always apprehensive and feel blue about going simply because I am in a salon where other clients are having their lovely, undiseased hair   being done and I feel like I am on display with my glaring hair loss.  It always looks worse when it's wet too.  But I feel better when I walk out and I can look pretty normal with the bangs and style that covers the bare sides. 

We all just move forward one day at a time, sweet friends.  

Hi all: I ordered some moogoo and will report back after I use it for awhile.  Here's hopeful it helps with the itchy, creepy, crawly feelings!

Sending love and support to all my FFA sisters on Rare Disease Day!

Ugh. One beet red hot ear and two hot spots on my head. Outta the blue. No reason for it that I can tell. Caught a falling hair today too that was twisted like a pretzel-a sign that FFA is active somewhere.

Put an ice pack on my head and ear and did get some relief. This is the thanks I get for thinking I might try overall color on my hair again at my hair appointment next weekend.

Stupid friggin disease. :(

Oh Minter, when I read your post the other day when you were feeling down, I totally get how this condition  can get to you. Am glad tho to here your haircut turned out ok. I resonate with what you said about the sweating &  the affect it has on the look of your hair. & how self conscious it can make you feel. We've had another incredibly HOT summer here in Australia ( day after day, week after week)this past summer & it certainly doesn't help with the itchiness & scalp sensations. Heat seems to aggravate it all the more! Glad you've been able to get hold of Moo goo.... I really like the shampoo & conditioner, scalp cream, & the protein shot helps with dryness. Let us know what you think of it .... best wishes Jules.                   Ps... Kandy15 ... 'same here', with your description of the emotional struggles living with lpp/ffa, how it makes you feel, the daily challenges, future uncertanties it forces upon us, how it creeps in & messes with our thoughts. Oh to just look & feel '& normal' again (without having to try sooo hard!!)

CurlyK You look AWESOME!! 

Thanks Kandy15 & Jules Australia I guess I was down too because of the thought of this stupid FFA stopping me from doing stuff that I want to do and it makes it even worse as it's not because of a physical limitation but only because of feeling embarrassed and self conscious and it is frustrating to feel like that :-(   & how great it would be to not have to think about HAIR all the time!

I am going to order the travel pack Today from Moo Goo, I am looking forward to trying it all out!  Yay!

Illustr8r I hope your scalp calms down and you hair appt goes well!

Questions for all of you courageous ladies: I'm wondering how many of you have issues with your skin as well? Ever since I was diagnosed my skin has been awful. The texture is much rougher now and it feels tight, leather like and itchy? But my forehead where I've lost hair is tight, smooth, white and shiny. It's like my skin is one big scar? 

And my eyes itch so much which drives me crazy. Is all this from FFA or just from getting older? Frustrating. . .

AnnieMay, that is a really great question.  My hands and arms have really been driving me crazy with being so itchy.  This is a new thing for me just over the past couple of weeks.  I thought it was the change in weather, then thought it was because I started taking Plaquenil a couple of months ago and maybe it's just getting into my system.  Then I thought it was my age (61).  I don't see a rash and the only area that is effected right now are the hands and arms.   I bought some Calendula Cream which seems to help.  I did some research yesterday and found that Natural Colloidal Oatmeal can be soothing so I ordered some lotion with the ingredient in it from Amazon. 

I'm anxious to hear what the other ladies on this site have to say. 

Hi, my eyes itch too!! I google obsessively.  I wonder about other autoimmune diseases which on top of losing my hair and potentially having awful skin would completely tip me over the edge so I rein myself in, try to stay in the moment (or have my head in the sand)  and make the most of every day!!!  Definitely not  easy to do, but our collective highs and lows and your ongoing virtual support helps massively! Thank you 

Skin: I have lumpy pitted skin around my mouth and lower jaw area. I hate it as I have always had nice smooth skin. Before this mess struck I would get compliments on my hair and complexion with people not believing how old I was. I feel I do look my age now (54, when people thought I was in my 30's) or older. It sucks. I now get red blotches about a 1/4 inch to a have inch that pop up, flake over, that then turn brown.

Eyes: Yep, weird dry eyes. Used to contribute that to wearing contacts and sitting in front of a computer too long. I now take vitamin called EZ Tears by Eye Promise and it has helped considerably.

Itch: Yep, itched for years! Double whammy that this stuff plus lower kidney function has one of the side effects as itching. I use CeraVe cream and if it gets too bad I squirt some Clobetasol into it. I have two jars-one with and one without.

Self esteem: It's taken a hit big time. Don't feel like going out and feel that people will be always looking at my pixie cut with my big ears sticking out. I am envious of women my age with their eyebrows and ability to change up their hairstyle and color. I get tired of trying to be positive some days and where I used to not compare myself to others- I do now. It's just a weird emotional and physical rollercoaster that I wish I wasn't on. :(

Not that I am happy that this is happening to you as well- but I am glad I am not alone!  

My hands and forearms will get so unbearably itchy that I will literally draw blood from scratching at times- it sounds weird but when it flares up it feels like something is biting crawling underneath the skin, like it is on fire inside my skin.  It is THE MOST Horrific feeling that I can describe.  

It has been happening for about 6 years now and I have tried to explain to doctors and they pat my head and prescribe steroid creams and off I go.  

So I have to take care of myself now. I have to avoid any sort of perfumed or heavy lotions on my arms/hands and use sensitive sunblock- if in a pinch if I have to use regular or any of the above I have to wash it off as soon as I can- oh yes I have to be careful with soaps that I use too and for some reason if I happen to get my cuffs wet/damp that irritates the skin as well. But I can use the pretty lotions and perfumes etc everywhere else, just not on my forearms/hands.  Weird.  

Coconut oil, almond oil, pretty much any of the "oils" are very soothing and when it flares up I now use a CBD salve and that tames it down fairly quick. Also I keep Gold Bond Excema hand cream in my purse for when I am out and about, that works pretty well too. I did try a spritz or two of  the nasal spray when it was mentioned here a few weeks ago and funny enough that helps to calm it down as well. I also will put my arms under cold water when it flares up.  

I feel really bad that this is happening to you Kandy15 and I hope it is not as bad as it is for me.  It is a horrible thing to deal with.  

Oh and I have dry eyes and not great skin on my face as well as the awful 'white band'.   illustr8r, I'm 54 too and  this roller coaster is not fun anymore, I want to just be normal again too :-(  

Oh boy, so many of us with LPP/FFA seem to have familiar experiences not only with the typical hair & scalp symptons but also the itching, red blotchy, changing skin issues; and the DRY EYES, which I always had a 'gut feeling' belief had a connection to lpp/ffa, ever since I first had the burning, creepy-crawly, tingling, itchy scalp (along with hairloss) feelings which hit me 'out of the blue' about 6 &half years ago. If you go through some of the earlier posts (or simply type in search box 'dry eyes' & or 'skin issues'), there have been may comments complaining of red, sore, dry eyes, blepharitis etc. Recently I found in my searches some interesting literature, a research study that confirms DRY EYE connection to patients with LPP:-  1. www.reviewofoptometry.com/article/scalp-disease-patients-at-risk-fo...  ("Ocular Surface findings in skin disease to a common etiology for both") published Aug 13, 2018  The article talks specifically about patients with LPP   2. donovanmedical.com ("Lichen Planopilaris & the Eye") under 'blogs & articles'- Scarring Alopecia May 17, 2018 (pub med article29757849). In relation to the same study, Dr Donovan talks of dry eye and MGD (Meibomian Gland Dysfunction), meibomian glands are the oil glands of the eyelid/eyelashes. Other studies have investigated occular findings in several skin diseases with immune dysfunction ie rosacea, psoriasis, alopecia areata; so I,think it's MORE than likely these other skin issues as well as the dry eyes have a connection to lpp/ffa. "Meibomian glands are part of the skins sebaceous gland network & are thus responsive to the same inflammatory reactions at work in hair loss".  

Hola all, a product I have found really good for irritation, itchiness and also has calendula which is fantastic for healing is Hope's relief ( available at chemist warehouse in Australia) but also on line, so soothing, full of lots of goodies, I buy the cream.  I continue to read all your posts and am glad we have such a wonderful support network.

Take care, 

Minter & Kandy15, I wondered, do you still have arm & leg hair ornhave you lost hair there also, & have you lost eyelashes as well as eyebrows? I have lost ALL! During the year prior to my sudden onset of intense/wierd scalp sensations along with hairlossalong frontal & temoral hairline (in Oct 2012), I had a lot of annoying itching (on & off) for months on my lower legs....I'm pretty sure at that time I noticed that I had already lost most of my leg hair (no more shaving, haa, one positive).....still, would prefer to have hair there with NO itching or ffa/lpp! than no leg hair plus itching WITH ffa!!! Also this was the time I was losing my eyebrows also. Then, sometime in 2015 I had very itchy forearms with reddish blotches, turned scaley. A friend of mine who suffers with excema (she is 70 & had it for many years, & gets very itchy with it) said she thought that's what it looked like on my arms. The itchiness was extremely irritable & intense, lasted for 3 weeks, then disappeared & ('touch wood') I haven't had it again. But it was truly awful & so I really feel for you Minter, Kandy15, & others having to deal with this symptom, especially on a recurring 'flareup' basis. Lately my eyelids & especially along where the eyelashes should be  (i have a few left, but have lost most) have been irritably itchy, & one eyelid more red than usual. Also have been getting little pinkish red round flat spots on face ( mosltly at sides of eyes area), which feel a little hot & mildly itchy (not there all time, but comes & goes),...wierd, wierd, wierd!  like so many other symptoms associated with this disease! Minter, hoping you have some success/relief with Moo Goo; overall, they seem to be great natural products; I've used the shampoo & conditioner for 6 yearz now (found nothing better for me); the 'Full Cream' body moisturiser & milk body wash are nice too& besides face cream etc there is also a sunscreen. Obviously there's no 'single approach' to fix this, we can only try things to help relieve our symptoms, it's never going to be a 'one size fits all' ......Ohhh, but I wish someone, somewhere, would discover that 'magic silver bullet' cure, sooner rather than later! 

Illustr8r,  I wholeheartedly agree with your feeling when you said "It's just a wierd emotional & physical roller-coaster I wish I wasn't on. ..I get tired of trying to be positive some days".....SAME, SAME, SAME. I FEEL, FEEL, FEEL it tooo. I too wish I could GET OFF the roller-coaster, gain back my self-cofidence & sense of peace/well being (which I mostly had as part of me before lpp/ffa).... At times it feels like this disease with its waxing/waning, & slow chronic  progression, is haunting me, it is literally in your face, so to speak, every waking morning. ... trying to stay consistently positive can sometimes be draining & 'wear you down'.... But somehow we all have to keep going, trying, what choice do we have. Once again, I am just so so thankful, grateful for the support of this forum ..... HUGS to you ALL !!

Hugs to you as well Jules Australia! Looking forward to my MOOOOOOOGOOOOOOOOO arrival! :-D   

They say the Lord doesn't give you any more of a burden then he thinks you can bear, so seriously how strong does he think we are to have to deal with this day in and day out!?! Actually if that is true,  I guess that makes us all pretty tough broads to be able to cope with this stupid FFA day in and day out. 

I don't have any arm hair and the hair on my calves is mostly gone but still is pretty much normal on my thighs and everywhere else.  Actually that is how I realized something was not right- when I looked at my arms one day and saw I had no hair, what the heck?  How I never noticed it going away prior to that day, I'll never know. I had the intense itchy flareups starting about a year before I noticed the missing arm hair.  So that is what sent me into the world of Dr Google and then to actual doctors and then eventually to you all, who are fabulous by the way! I would be a blubbering mess if it weren't for this forum not knowing what is happening to me.  

I have my yearly dermatologist appointment this week- she's got me coming in once a year now just for my normal check up since I don't take any prescription medication there is no reason to go in and spend the time and money unless something unusual occurs :-/

Going to finally ask about Latisse for my brows/lashes as I don't want to lose those too and have been wondering about Rogain/Minoxicil if it might 'thicken up' the thinning hair on top of my head- or will all of this be just useless efforts to stem the inevitable!!!  

I have have very dry, itchy eyes--I use eyedrops called Systane Balance which are available in the USA as over-the-counter without a prescription.  They were recommended by my optometrist.  I've noticed that a lot of posts discuss sunscreens.  We spend a LOT of time in the tropics and I found this wonderful line of clothing that was developed by a physician for people with sun sensitivities.  The website is https://www.sunprecautions.com/ and I love using their swimwear because I don't have to use sunscreen anywhere except the tips of my ears.  Now that my FFA is active again, I seem to be itching everywhere.  Also, in response to questions about hair loss in general--I  have lost almost all leg and arm hair--just have a few little wisps that are hardly noticeable unless you are looking for them.  Most "private" hair is also gone.  I hate,  hate,  hate this condition.

I have lost most of my leg and arm hair as well.  Like Mary, I have very light hair on my arms but to see it I have to hold my arm up to the light to look for it.  Too bad that this disease hasn't effected the hair under my armpits. Still have to shave there all the time.  

I have used Rogaine on and off for many months.  Maybe if I used it everyday like the instructions say I would see a difference in my thinning hair but I haven't been faithful to it.  I guess what is so irritating about the oral medications we take and the topical lotions/foams/ointments that we use is that they all take 6 - 12 -18 months before we could see any results.  In the meantime my hairline keeps receding back at a pretty alarming rate.  Once it's gone, it's gone so what good is something that isn't going to help me for 12 months?  I have a picture of my daughter and I at the beach in September when I had not lost any hair at the front hairline. The rash started in November and I have lost about 3/4" in just that short time.  I had already lost 1 -2 inches on the sides of my head about three years ago but was able to hide it with my longish hair.  Now I have shorter hair so I could have bangs to try to cover up the front hairline.  So distressing for all of us who battle against this stupid disease every day, trying to do what it takes to look and feel somewhat normal. 

Feeling yucky today.......    

I have, well, I mean I had light blonde hair on my arms as well which is why I think it may have taken so long for me to finally realize it was no longer there.  

Thanks for mentioning the Rogaine, I have a feeling I would be the same- not being too very faithful in using it every day. So perhaps it will not be for me and to be honest, what is the point at this point really.  

I am sorry you are feeling down Kandy15.

FFA really, really, SUCKS. 

Seems like we are all having a ‘down’ time with this silly condition.  My best wishes and good luck to you all.

Will the burning, itching, stinging and weird scalp, skin and facial sensations, itchy, sore eyes, rapidly ageing skin and hair loss continue until all hair has disappeared?!?!  Is there anyone out there who has beaten this?? 

For those of you on Facebook, CARF is doing a FB live event at 5:30 pm eastern today. Learn the latest on research from the American Academy of Dermatology conference. 

Hey Jules Australia, thank you So Much for mentioning MooGoo!  The MooGoo box arrived the other day and I love, love, love the shampoo, conditioner and the sample protein shot they sent along as a gift, my hair looks and feels the best it has in a very long while! 

Hi. As some of you may know I have been part of the genome study. I have FFA as does my mum. I received an email this morning from Dr Tziotzios with some interesting news on the study. With this information Dr Tziotzios and his colleagues hope to look in to new treatments for this condition. Here is the link to the study.

http://www.guysandstthomasbrc.nihr.ac.uk/2019/03/08/scientists-iden...

Liz

xx

Hi Curly K did the live event in FB reveal anything of any interest? 

Thanks Jules Aust for the info re moo goo products and minter for your further recommendation l. 

Hi Liz - thanks for the prompt post re: research from Dr T - I’ve been waiting for the results with bated breath...I need to inwardly digest the data but at first glance it seems I am genetically susceptible (?) and because I’ve taken hormone medication over the years for which I am now going to blame myself for doing... I now have FFA?!  ... if he is advocating JAK inhibitors as relevant treatment I’m not sure that is going to help as there appear to be so many potential side effects...  I was probably expecting too much from this study... 

you are all so brilliant - thank you.  I learn so much more from this group and my relentless internet searches than the NHS.  

Thanks xx 

Thank you Liz for the article link! Agreed that it’s pretty technical info but basically looks like all other auto-immune diseases, we are genetically predisposed (gun loaded) and something caused the disease to happen (trigger pulled). I don’t think you need to blame yourself for HRT causing the disease Afraid, I have never taken them! Rather, something I believe in the endocrine-disruptive activity of various chemicals in our environment (be it body care products, pesticides on foods etc) has/have much to do with this. I do think hormonal fluctuation of menopause has a strong potential link. 

FYI I have been on the accutane protocol for nearly 17 months and my loss stopped about 5 months ago. Let’s hope it sticks. I’m not willing to stop the accutane until that tufting goes away. Itchiness and redness are also gone. I have been eating clean for a year and through research have strong feelings about the importance of remaining vegan (have been doing that for 2 months now, and btw I love it and find it yummy and easy!—-I am appreciating YouTube’s with Dr Michael Greger, Dr Brooke Goldner, and various others in the whole food, plant-based world). 

Take care and hang in there, all! 

I think HRT saved my hair! I definitely think it’s hormone triggered because when mine crashed my hair fell out. The same thing happened to another client of my hairstylist. She lost 1/3 of her hair and her eyebrows thinned (but didn’t disappear like mine). Once she got her hormones on track her hair recovered but not to it’s prev glory but at least she can live with what she has. She doesn’t have FFA though. I was on birth control for a short time so something I did in my 20’s makes me go bald in my 50’s?!? So many questions! LOL!

I’m happy to hear that dr might be taking a different approach to treatment because what they do now doesn’t seem to be doing much. It’s such a random mystery-why me and not them?!?

Thank you for sharing the results from the study. Very interesting!

Wow, Thank you so much Liz for sharing the article about the genome study in the U.K. kind of disappointing to think I have a gene mutation although I am not surprised that FFA is associated with a gene mutation or variation.  The birth control pill thing took me completely by surprise. I took birth control bills for about 2 weeks in my early 30s and did not like the effect on me so discontinued them. I really thought it was SPF in sunscreen and moisturizers and shampoo and conditioner that caused a gene to mutate and that gene controlled hair follicles and auto immunity. Tons of women took birth control pills. Seems like everyone would have this if it was caused by birth control pills.  I just needed to vent and I know all you lovely women are there for support.

I also took part in the study at Guy’s and received Dr Tziotzios report.  Ladies please all click on the link that Liz has kindly shared.  It gives an answer as to why we have developed FFA and also suggests using JAK medication might well be an effective way forward. 

Interesting, I took part as well but did not receive an email- so glad it is being shared here!  

I took part as well and did not receive an email.  Debs, where did the report mention JAK inhibitors?

I'm also out of the UK and wasn't notified  via email, even though I went to the UK to participate in the study. It's possible they only sent the email to participants via the British NHS

Does anyone know the side effects of JAK inhibitors? Is anyone on JAK inhibitors currently?

Are they blaming FFA on hrt?

Yes, it does seem the non-UK participants didn't get notified for some reason...

As far as HRT I did skim through the report but it was not an easy read for me at all so I have no idea :-( but god I hope not, as I can't give my HRT up, no way- no how. 

I don't want to be dealing with FFA and be a sweaty, overheated, irritated mess as well!!

Hi all,

I read the post on the Genome study around 2:00 a.m. this morning.  Yeah, This stupid FFA has robbed me of my ability to sleep much since I worry about it all of the time. 

It seems as if the JAK inhibitors may be a way forward for people with alopecia areata.  I think in this type of alopecia, the hair follicles are not dead like they are in FFA so they have a chance to be reactivated??  Not really sure about that but it would be truly wonderful if us FFA gals could find some hope if it could help us.  I would ask my dermatologist on my next appointment but I seem to know more than she does about this condition due to my research and all of you brave ladies who have shared such good information.        

I reread that report. Someone in the FB group posted it from Dr. Donovan's site and it was a little less "medical" to understand. It does seem that the JAK inhibitors sound more promising a treatment because researchers seem to think now that FFA aligns more with Alopecia Areta (sp) than it does with Lichenplanopilaris. A glimmer of hope I guess...more research please!

Hello all! Does FFA cause the hair you have remaining to grow slowly? I chopped all my hair off about a year ago before FFA had come into my life. Now I feel if I had my hair back, I could hide the hairline with bangs. My hair is very curly. I had my husband shave my head a few weeks ago and it’s barely a buzz length so far. That reminded me that I noticed my hair had been growing slowly last year before the FFA. The last time I got a haircut (when I had hair), I asked the beautician how long it has been since my last cut and she told me 14 weeks! It had taken over 3 months before I felt I needed to shape it up which meant it had been growing very slowly. If FFA causes slow hair growth too, I might never be able to grow it long enough to hide the baldness. 

@spoilmygurl My hair seems to have phases and my stylist says that it’s true that hair growth has an ebb and flow. I use Castor Oil on my head 5 days a week and it’s improved my “good” hair and it helps my hair during those slow phases. I used to have a chin length bob but as FFA took over it became a shag cut and now I have a pixie. Not my first choice for hair style as I spent a lifetime hiding my big ears and now they are out for the world to see!

I saw on another thread that you are losing your eyelashes. Get a prescription for Latisse or other have suggested Rapid Lash. I had thinning lashes too and it helps the grow and stay normal. 

What I hate about FFA is the constant maintenance to just look-okay. Deeply frustrating! 

@illustr8r I’ve heard a lot of people sing castor oil’s praises. I might have to start using it. I used to use Latisse in 2011 before I microbladed (it worked on my brows and lashes). You’ll never believe what happened. It caused the fat deposits around my eyes to atrophy. My eyes were sooo sunken in. I looked like a zombie. I had to get Restylane to fill up the hollows. The amount of Resty it would’ve taken to get me to normal was cost prohibitive. So In Nov 2016, I had a fat transfer to the face to get back to being me. You know Latisse was created when the big wigs realized a side effect of the glaucoma medicine that it derived from caused lash growth. If u go down that rabbit hole, you will find a lot of the glaucoma patients complained of fat loss around the eyes. But when you have to choose between sight and vanity, the choice is pretty clear so it’s mostly just considered a small price to pay. And it’s not a super common side-affect. But it happened to me. 

OMG @spoilmygurl! I’m so sorry to hear that! :( I don’t use Latisse daily. Once a week. I stopped it for a long time but my lashes started to shed. Castor oil works on lashes too so I sweep a teeny amount across my brow and lashes at night. 

It sounds like you react easily to things. I would do a test patch first before massaging a decent amount of it into your scalp. My dermatologist has several ladies who’ve had success with Castor oil. They’ve decided against meds like me (except Clobetasol). We just start using it after doing research and told her afterwards!

Thanks for letting us know that Dr Donovan’s website posted the genome study in speakeasy. What does everyone think of the JAK inhibitor treatment?  Dr Donovan has info on JAK inhibitors and it seems the side effects include reduced red and white blood cells and platelets, higher cholesterol and other side effects that seem serious to me. Please take a look at Dr Donovan’s website and his treatment handout on JAK inhibitor.

i would really like some group input on finasteride. I have been on finasteride for at least 9 months and my dermatologist believes it is helping me. Since the genome article I have to agree.  I feel it is affecting my memory. I always was a bright person. When I went thru menopause, I felt like it took a few seconds to recall memory sometimes. Now I feel like the memory is just not there to be recalled.  Alzheimer’s does NOT run in my family. I am concerned for the future and I need to be independent the rest of my life. Has anyone else noticed reduced memory recall - short term memory that is also on finasteride.  I would really appreciate your input. Thanks so much.

Hi Toby,

I have been on finasteride for a couple of years now.  I sometimes do feel like my memory or recall is not what it once was, but I am 61 and I notice both of my sister's memories, who are a bit older than me, aren't quite as sharp either, so I have just chalked it up to aging. It is really hard to tell whether these drugs cause side effects or not, and how long to continue with them.  I asked my internist if he had any concerns with me taking it and he was fine with it.  I actually feel like mostly my lack of recall stems from the fact that we multi-task so much and that I don't truly concentrate on what I am reading or listening to.  I find if I do pay attention and focus my memory seems fine, so I would say that I don't think the finasteride has diminished my recall/memory.  Just some aging issues!

Karen, thank you so much for your reply on finasteride! I really appreciate it!  

I know I have a lot of questions but I’m new to the club. I couldn’t find an answer to this. I have lost ALL of my eyebrow and eyelash hair. Does FFA scar those follicles too? So they will never grow back? Or does that type of skin not scar? Also, I’ve lost ALL of my arm, leg and armpit hair. Not that I really care, but I’m curious- does that skin scar? Or has the follicle just gone dormant? Is there a way to tell if skin is scarred by looking at it with the naked eye? Or is a special tool required? Thanks!

I don't know the answers to your questions. I can only talk from my own experience. All my leg and eyebrow hair has gone. Still have some eyelashes. I have invested in the interlace system which is the best thing I've done. Expensive but worth it.

i don't take any medication now just antihistamines. I've had the condition for nearly 7 years. It's a pain but I have mostly come to terms with it.

best wishes.

My left eyebrow is missing just on the outer third of it.  Both eyebrows are sparse but still there enough that I have a brow box and darken them to look like I have something.  Thinking microblading may be in my future. My eyelashes are still there but definitely not full and lush like they used to be.  I am 61 and have noticed that my older sisters eyelashes are not like they used to be, so I hope it's just an age thing.  Maybe FFA will spare them but you never know with this condition.  It seems like every morning I see something else that has diminished.  FFA is like a thief in the night, but the funny thing is I never see lost hair on my pillow.  I just notice changes to my hairline, brows, lashes and even skin texture when I look in the mirror.  It makes me sad. I so miss the happy, peppy me.  Now I don't want to go anywhere or do anything.  I'm trying hard to get to the acceptance stage.  Maybe I will find a sort of peace there.