Replies to This Discussion

Permalink Reply by Mandy on October 29, 2013 at 5:12pm

Hi Sam

I'm new to this but this is where I'm at...


AGE: 51
STATE/COUNTRY: Birmingham, UK

HISTORY: I first notice my hair loss and a thin red line along my hairline at the beginning of this year. I have lost about 1cm at the front of my hairline and about 2cm at my temples. My eye brows have been thinning for years... Too long to remember when it start and I thought it was what happened as you got older!

I finally decided to go my own GP in May of this year and he was great knew straight away that I had FFA. He put asked me to use Betnovate twice a day and asked me to go back in two weeks, he also referred me to our local Dermatologist. On my return visit some hair had grown back on my temples and there were fine hairs along my hairline but their was still redness there, so he said to continue to use the Betnovate, he also gave me Doxycycline 100g to be taken once a day as he said it would help to get started early, he also said the Derm would be likely to give me this too. He is GREAT!

I didn't get an appointment with the Derm till September of this year! She was rubbish! Took me off Betnovate and Doxycycline said they did nothing and put me on Dermovate. She also sent me for blood test and photos and requested a biopsy.
Dermovate burnt my head so I m back to using Betnovate and Doxycycline. Have an appointment to see my GP this week and intent to request to be referred to Dr Harris as my Derm also told me I would probably see someone different every time!
I have my biopsy booked next week and another appointment booked with my Derm in December.

SUSPECTED CAUSES: I think I have been losing my hair for some time at least 3 years maybe more because I seem to remember the redness before and putting it down to colouring my hair (which I have done since I was 16 lol). I was involved in an RTA about 10 years ago and I believe the shock etc could have something to do with it!

MEDICATIONS: Betnovate twice a day, morning and night and I have lots of new hair growth at my temples and in my hairline. The only good advice the Derm gave me was to try it on my eyebrows, so I did! I applied it morning and night with a cotton bud only lightly no drips etc... And it's really worked! Eyebrows are back so this was a success. Doxycycline seems to help with the redness, but I don't think I have lost any more hair although my hair does seem thinner at the front?? Dermovate used for 2 weeks burnt my head and don't use any more!

VITAMINS/SUPPLEMENTS: B-100 vitamin b-Complex once a day, Turmeric 4mg twice a day and Cod liver oil with omega 3 once a day.

TOPICALS: Think I am putting this in the right area...Natural Zinc from my homeopath twice a week the redness seems less on the days I take this, Alopecia pill from my Chinese Herbalist... Not sure about theses?? Natural Oils mixed by my Aromatherapist which includes Rosemary, use at least once a week. Lately I have been rubbing a little on my hairline before going to bed and my scalp seems very settled at the moment.

INJECTIONS: None at the moment

DIET: Try to eat healthily... Lots of fresh fruit and veg, chicken, fish etc... Keep bread to a minimum about once at week. Try to drink lots of water... Cup of tea first thing and the odd coffee. I don't smoke but a like a drink now and then. I walk my dog twice a day and try to fit in a long walk at the week ends.

HAIRCARE: L'Oreal - Elvive Triple Resist Reinforcing Shampoo and conditioner. Usually wash my hair every other day. Use mouse,hairspray and styling produces as normal. Colour my hair every 6 to 8 week and have done for years. Use my oils in my hair at least once a week and leave them in over night.

Permalink Reply by Liz Lov on January 2, 2014 at 5:53pm

Hi Sam,

I've just been diagnosed with 'probable' FFA, bit of a bombshell really, I thought my receding hairline was just age-related. A quick question for you, what kind of Betnovate are you using? Is it a cream? ointment or lotion?

My dermatologist gave me Synalar gel to use twice daily. I'm just starting to research what may or may not work.

Thanks, Alex

Permalink Reply by Sam on October 30, 2013 at 11:49pm

Thanks Mandy!

So here is mine...

AGE: 41

STATE: NJ

HISTORY: I first noticed my eyebrows thinning for about 2 1/2 years now.  At first I was extremely freaked, went to 4-5 different doctors, derms, holistic nurse, looking for answers.  Then I noticed they would kinda cycle, fall out but then grow back, so I settled down a bit, just used eye shadow when I had patches.  About a year ago, I noticed my hair thinning along the sides and front hairline.  When I was at a different dermatologist at the practice I was seeing I mentioned it and she was like I think its FFA. She referred me to Dr. Shapiro in NYC but when I found out it was almost 900 for a consult without insurance, I almost didn't go but I ultimately did luckily (because I really like him).  I also went to a Dr. Pappert in NJ that did take insurance.  Dr. Pappert did the biopsy and made the diagnosis of FFA.  I now see them both but terrified of taking oral medication because of the side effects.  I have 2 young kids and a husband that says he doesnt care if I lose my hair so I am VERY reluctant to chance the side effects.

SUSPECTED CAUSE:  I have been under some stress when this started, so my guess is that this triggered it.  At point I was taking lexapro and I wonder if that could have lead to it as well.

MEDICATIONS:  I am tempted to try Doxy (but only short term with lots of probiotics and courses of Nystatin to counter the killing of all the good bacteria in my stomach) BUT, I did take it for 10 days a few months ago for an infection and I feel like I had more hair shed during that time.  When I google Doxy and hair loss, a lot of comments come up about it so that makes me very concerned that taking it for me, would have the opposite effect.

VITAMINS/SUPPLEMENTS: (when I remember, so it fluctuates) I take daily, 2 fish oil, 2 tumeric, Vitamins D and B, Culterelle, Brocomax, Biotin, Iron, Vitamin C.  In my daily smoothy, I have a powder Fiber, Mangostien, Aquai.

TOPICALS: I have both Clobetesal and       .  I am afraid to use the Clobetesal because Dr. Shapiro has found that is causes veins to show on the face.  When I use the other that he prescribed, I tend to think I have more shed after using it.  Since both doctors are not optimistic it will be enough to stop regression, I don't use it too much.  I have used Lattisse on my eyebrows and hair line.  I am not sure if I notice a big difference with my brows but felt as if I see new hairs on my hairline.  I recently ran out so I've been about a week without it while I wait for the new script.  Not sure if I am noticing a decline in the meantime or if I am in a slight panic.  Also, not sure if using it is helping or causing more to fall out because I think I have noticed more shed since using but I still see the new sprouts... tuff call.

INJECTIONS:  I have done these.  3 months so far.  Have 2 additional months scheduled.  Dr. Shapiro did first, 30 injections, 1 cm back from my hair line, in a headband arching from behind one ear, over to the next.  The next one I went to my other dermatolgist who was out that day but a Resident Physician did it and did not follow what Dr. Shapiro had sent.  She only did about  injections and went as far as 2 inches back in one spot.  I am a big believer in not injecting the hairline as you will get visible indents and that hair is already gone.  However, I was so upset that this one went so far back.  So, I made my next 2 appointments with Dr. Shapiro even though I have to pay out of pocket.  I did notice a lot of shed a couple of days after this last, 3rd injection but not sure if from that or that I cheated a little on my diet that weekend...  As for dents, i feel some bumps in my head.  I am not sure if these are the indentations I am feeling, however, they are in my hair so not visible.  I may reconsider after my next (4th) appointment to see how long I should continue.  

DIET: I am now on the Paleo, Auto-Immune version diet.  This means no carbs, no dairy, no tomatoes, no eggs, no nuts (although I cheat with almonds a little), no alcohol - I cheat a little once every week or two, this one is hard :(... I do think the diet makes a huge difference.  First, I dropped 10 pounds in 2 weeks.  Also, I feel so much better when eating this way.  If I slip, I get tired and cranky.  If I cheat, I feel like I can notice hair shed too.

HAIRCARE:  I use prescription Nizoral (although red and called something else.) I do this every 3-4 days.  I also use Just Natural Organic Loss shampoo and conditioner.  I wash every other day, alternating between the two.  I have also noticed that my frizzy hair is not wavy.  I think its the organic shampoo.  I also color my hair but have been going longer and longer.

COPING: Friends and husband being encouraging and saying no big deal, trying not to worry too much.  Ordered lots of headbands getting ready.  Ordered one wig so far and will order more.  

SUCCESS:  Not yet.  Fingers crossed!

Permalink Reply by Mandy on October 31, 2013 at 5:45pm

Hi Sam
I think I agree about Doxy... No longer on it as script has run out now and the Derm wants to wait for the biopsies... But I think in the time I've been taking it my hair has slightly thinned on the front and I have had two bouts of sickness and upset stomach!
I'm also trying the diet route... But it can be hard at times but I have lost weight... Just need to sort out fitting in a little more exercise!
COPING: I too have great friends, loving husband and kids who love me for who I am and not for my hair. I have one special friend who has made me a promise to be honest about my hair if she sees a difference etc.
SUCCESS: Small ones... The oils and head massage works well for me and really reduces the redness... Check out rosemary oil seems to work wonders with hair etc. Betnovate has worked well on my eyebrows and they are totally back... I use it on my scales morning and night and I have lots of fine re growth alone my hair line... So who know... Maybe in the future someone will come up with a cure... But for now we just have to stay positive x

Permalink Reply by Sam on October 31, 2013 at 10:57pm

Hi Mandy,  i need to try the oils, I have ordered some that others have recommended but haven't started using - not sure of how much to use, worried it will not work, etc. I will need to check out Betnovate as well - is that just a topical for inflamation or does it have hair growing qualities?  I decided today that maybe the injections are not so great and possibly making my hair thin.  It really has been thinning quite a bit in the months since I started them.  I swear, the biopsy triggered more too.  I may skip the injections next month and see if it makes a difference.  I really didn't want to do them for long anyway, just to see if it helped and if it's not, then I shouldn't continue.  Ugh.  Was really hoping they would work so I wouldnt have to deal with any oral medications - that really scares me most.  It is just so crazy that so many people try so many things and nobody knows what works.  Hard to stay positive but trying :)

Permalink Reply by Mandy on November 2, 2013 at 11:57am

I saw an aromatherapist and had a consultation and she mixed the oils to meet all my needs e.g. My hair loss, menopause etc... Betnovate is a liquids steroid that was prescribed by my GP and I apply it to my hairline morning and night... Seems to work for me at the moment... I have re growth at the temples and in the hairline to. I know it's not a cure but it is helping me.

Permalink Reply by Brooke on November 7, 2013 at 3:59pm

AGE: 70

STATE: OREGON, US

HISTORY:  FIRST NOTICED MY EYEBROWS MISSING PATCHES, THEN  HAIRLINE RECEDING, THEN NO HAIR ON ARMS AND LEGS.  WENT TO MY GP LAST FEBRUARY AND SHE FOUND THAT MY BLOOD IRON (FERRITIN) WAS EXTREMELY LOW.  DERMATOLOGIST DID BIOPSY WHICH WAS POSITIVE FOR FFA.  HE SAID FERRITIN WASN'T THE CAUSE BUT THAT THE LEVEL SHOULD BE AT 70 TO BE ABLE TO GENERATE NEW HAIR.  i WASN'T CONVINCED THAT THE DERMATOLOGIST KNEW ENOUGH ABOUT FFA SO I FOUND A SPECIALIST THROUGH CARF.  SHE HAS BEEN DOING INJECTIONS AND OTHER MEDS.  THE THINNING AT MY HAIRLINE IS PROGRESSING BUT SLOWLY, EYEBROWS ARE STILL PATCHY.

CAUSE:  I HAVE NO IDEA.  I'M RETIRED AND NOT UNDER ANY PARTICULAR STRESS, ALTHOUGH I MOVED TO PORTLAND FROM ANOTHER TOWN 2 YEARS AGO AND THAT WAS VERY STRESSFUL.  i WAS VERY DEPRESSED AND SICK FOR OVER A YEAR; THERE MAY BE A CONNECTION.

MEDS:  DOXYCYCLINE 200 MG/DAY; HYDROXYCHLOROQUINE 400 MG/DAY; STEROID LOTION ON SCALP TWICE A WEEK. I WAS DOING INJECTIONS SEVERAL SESSIONS BUT THE SPECIALIST WANTS TO SEE HOW THE ORAL MEDS WORK.  iALSO TAKE ANTIDEPRESSANTS FOR CHRONIC DEPRESSION.

VITAMINS:  MULTIVITAMIN, BIOTIN, CALCIUM, MAGNESIUM

TOPICALS:  FLUOCINONIDE SOLUTION TWICE A WEEK OR WHEN SCALP GET RED AND ITCHY.

INJECTIONS: NONE AT THIS TIME

HAIR CARE; COLOR EVERY TWO MONTHS WITH SOMETHING THAT HAS NO AMONIA OR PEROXIDE; REGULAR SHAMPOO  AND CONDITIONER.

COPING: ONE DAY AT A TIME!  I WAS VERY DISTRESSED WHEN I GOT THE INITIAL DIAGNOSIS BUT NOW I FEEL THAT I'M DOING EVERYTHING I CAN AND I'LL JUST DEAL WITH THE CHANGES AS THEY COME.   BEING OLDER HELPS I THINK--THERE ARE SO MANY OTHER HORRIBLE THINGS THAT I COULD GET AT THIS AGE.  THIS WEBSITE AND FFA GROUP HAS BEEN ENORMOUSLY HELPFUL; I'M VERY GRATEFUL TO READ OTHERS' COMMENTS. 

Permalink Reply by Debs on November 8, 2013 at 12:46am

Hello to you Brooke, I am using the same oral drugs as you.  Nice to hear what others are taking, it is reassuring to know our derms are at least following a very similar protocol.  I hope you have an enjoyable weekend. XXX

Permalink Reply by Katy M. on December 7, 2013 at 4:09pm

I'm 42

Minneapolis, MN

around 32 I noticed my brows thinning.  They tried steroid injections.  nothing helped.  I eventually got them tattooed and after that the rest of the hair fell out.  I always felt extremely self conscious about my brows, though friends and family insisted they didn't notice- but I always wore bangs to camouflage them.  After the tattooing faded I deliberated about the expense of a transplant (or eyebrow restoration- from hair on the back of my head) and finally had it done this August.  It was that doctor that suggested I get a biopsy because he thought it looked liked FFA on my hairline.  I had noticed thinning hair, but wasn't seeing the "scarring" or inflammation and had no pain on my scalp.  Our hopes regarding the success of my brow transplant is that after such a long time- the disease has burned out in the brow area- mine must be pretty slow going in that I lost my brows 10 years ago and am just now noticing receding hairline and thinning in the front (on top).  

A biopsy revealed LPP (which I understand IS FFA...but I don't understand differences if there are any)...

My dermatologist started me on Monocycline first which made me feel so nauseous that I couldn't take it and we have now switched to Doxycycline Hyclate 100MG twice a day and Clobetasol Propionate at bedtime (the solution on my scalp really helps when my scalp is feeling sore and sensitive).  I have noticed no difference but only been on this course about 6 weeks and not been very careful about not having dairy when I take the meds- plus the doctor says we have to give it 3 months before switching to another course- which will be Plaquenal next.  Going forward- I will cut out dairy to give the Doxy a fair trial.

I am not on any particular diet.  Should be, and am reading about paleo and considering a go- though, honestly, I'm quite social and a foodie and limiting my diet is treacherous to my social life and lifestyle (cooking, travel and entertaining....) If there was a guarantee that giving up dairy or alcohol would make my hair grow back, I'd do it, but I don't want to sacrifice quality of life on speculation.

I'd be curious to know what effects moderate drinking (2 a day) has shown regarding FFA.  My derm thinks there's no link.

Good News: my eyebrows are growing in.  The transplanted hair fell out (as expected) and from 3-12months post op I find out how much will grow back in.  They are starting to fill in...sparsely, but just having ANY hair on my brows feels trans-formative.  I'll post pics of pre and post op brows and where they are now soon.

As far as my hair- my bangs and hair style- hide the thinning usually, along with some hair powder (love Bumble and Bumble hair powder- covers the thin parts on my scalp and adds fullness)- though, because I'm in sales and must do trade shows and meet with customers and vendors- I am being proactive about accepting the next step of a wig, if and when it comes to it.  I did meet with wig consultant and bought my first good quality synthetic wig so it's ready for the first really BAD hair day I have and I scouted out a human hair wig I'll invest in if I start wearing my wig regularly.  I wore my new wig home from the shop and it felt so odd.  It will take some getting used to.  But I figure I'll just have to get my brain in a place where I say, "fuck it" and "who cares" if I'm wearing a wig.

I did go back on Zoloft because I was feeling so glum about this.  It seems to have lifted my spirits a bit...or I'm just coping better.

I still color my hair every 4 weeks (along with regular bang trim or full trim).  I have LOTS of gray (which started in my 20's).  Anyone else gray prematurely? 

I am not even peri-menapausel.  Still have a regular cycle.  I have a 2 1/2 year old (born 6 weeks before I turned 40).

Parenting is stressful.  I have some work stress, but overall enjoy my career.  I definitely need to start regular exercise again...if just for mental and physical health and stress relief.  But been pretty lazy last few months.  No medicated shampoos- but good quality Pureology (moisturizing).  Ok.  That's all for now.

Permalink Reply by Debs on December 8, 2013 at 6:19am

Katy you can take the doxycycline at the same time as the hydroxychloroquine sulphate (plaquenil) you might consider asking your derm to give you both now rather than wait to see if the doxycycline is working by itself.  I am using both meds, so are many other ladies, I first used hydroxychloroquine sulphate (which has slowed the hair loss down but it is still active) after 8 months he has now given me the doxycycline too.    I am wearing a wig in my photo on this site and also wear wigs to work.  I started wearing a wig when I had only lost 1cm from my front hair line because I wanted to make the transition before anyone, particularly work colleagues, could notice I had hair loss.  I practiced wearing my new 'hair' out in the evenings with a few trusted friends so I basically had a go wearing it for about 4 months before I ventured into work with it on.  I was then used to the feel of it and although I was very stressed out that first day I have been relaxed wearing it to work ever since.   Check out www.wigsbypattispearls.com to see Patti explaining everything in her great videos of how to wear wigs with confidence.

Permalink Reply by Katy M. on December 8, 2013 at 9:57am

Debs! Thank you so much for the great advice! I chatted with a dermatologist last night at a party and she also told me to switch to plaquinel ASAP. Thank you for the advice on the wigs, too!! Just so helpful.

Permalink Reply by MJ on December 13, 2013 at 8:40am

Hi, I am new. Just got diagnosed with FFA yesterday. Just started hydroxychloroquine 200 once per day ( cant do more because i am small). Also clobetesol morning and night 2 weeks on and 2 off. I just put it on last night for the first time and cannot figure out how I am supposed to use this in the morning and go out in public. It was a goopy mess on my hair. Did I put way too much on?

I am 50, a breast cancer survivor, and the mom to two little girls. My biggest fear is losing my eyebrows. i think I can handle a wig. Arm, leg, underarm hair, eyebrows, and eyelashes have thinned. My temporal and top hair loss is no yet noticeable to the casual observer. Can someone give me hope that this treatment will halt the progression? So worried about side effects. i want to stay healthy for my family. Will I get some sort of notice of responses. Should I have put these comments in a different section?

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