Hi....I am new to this group.  I was diagnosed with ffa in December last year   I am on plaquenil....which does make me feel slightly nauseas.  Am also using minoxidil once daily but last Friday was given kenacort A10 injections to front & neck areas of scalp.  I have some itching. Is anyone else having these treaments?  Is there anyone  else from Australia?

Hi Pams (Jules Australia) from Fernvale (near Bribane/Ipswich, Qld) I. Have ffa/lpp (diag by biopsy July 2013), but self diag about 4 weeks after onset of sczalp pain/tenderness, wierd creepy crawly feelings, itchiness & bizarre hair growth/texture changes, frontal bi-temporal loss etc. Has progressed around ears (behind, in front & above). Considered hydroxychloroquine (plaquenil) but decided pootential eye toxicity side effect too risky. I take nothing as believe nothing effective/without harm out there as yet. Scientists still researching, still a lot of unknowns on this nasty chronic disease. I've done a fair bit of research so far, (ncbi.nih; jid-journal of investigative dermatology&others). This is a great supportive site to discuss topics with women going thru similar dilemmas; Although I am sorry t hear you have been diag with ffa it,s good to talk to someone who lives close to me. I have been trying to find woman around Brisbane area for a while but most comments seem to be fro m UK or USA. I would be happy to hear from anytime you need, even if just to vent. Jules

Does anyone know when FFA reaches burnout stage?

Good question.....I will say that mine seems to have slowed down considerably, so I am able to maintain the topper I wear while having the back and sides of my own hair blend in.  What is left of the sides around my ears does seem to grow too and requires trimming along with the back and bottom of my head.  

Hi Jen. My mum has had FFA for about 9-10 years. She has never had any treatment. She has lost about the same as I have and probably nothing noticeable for a few years now. So, if  hers has burnt itself out she has lost around 2" in ten years. I have lost about the same amount as her plus 1/2 an eyebrow. My mum has no eyebrows but she lost them quite quickly at the beginning of her FFA. I imagine though that it might be different for everyone

Hi Liz - I haven't been on the forum for a while but am thinking of trying to organise a spring get together - hope you might be able to come this time - hope all's well. x

Debs - I can see you are online - hope to see you soon ! x

Liz and Sad,

Thank you for your responses. I started in 2010 diagnosed in 2012. I have not had a significant hairline loss in 2014. However I had an overall thinning which is still continuing to date. I have lost 1"-2" in different places along the hairline. I am considering a topper.

Sad, how do you attach the topper? I would assume that there is not much strong hair to attach it to.

Liz, did mum have hair line loss all of the 9-10 years? Or had most of that loss occurred early in the FFA period?

Hi Jen

Mum lost most of it quickly and then it slowed right down. At first she thought that the visor she had been wearing was rubbing the hair off and for a few years she used to sit in the sun trying to tan where the hair had disappeared. It certainly wasn't getting worse during that time. She could never work out why it remained pale and wouldn't tan. Since then she says that she loses a few hairs here and there but nothing in comparison to what she lost before. She didn't know she had FFA until I was diagnosed with it and she realised that she might have the same thing. My hairdresser takes photographs of my head when I have my haircut. The difference between them is now minimal....This is why I wonder how any of us could ever know if the medication works. I have read a few people say that they have been taking medication and that they think it has slowed down their hair loss. My hair loss has slowed down considerable if not stopped altogether. Had I been taking medication I may well have believed that it was the medication which had slowed down/stopped the hair loss.

Hi Celia. Hope you are well :) Let me know when you plan the next meet up and I will try to make it xx

The topper clips in.....if you have it professionally styled and put together at a wig shop a "dressmaker" type person will sew in the clips so it fits at your best points.  There is a lace cap that the clips adhere to that also is where the hair is sewn in. Sometimes you can "ruff" up the hair it will attach to a bit so it fits better if the hair you are clipping it too is thinner.  I have two.  One real hair, very expensive, I wear every day, wash, style and color when it starts fading, and a synthetic one that fits a bit differently, and can be washed more easily and works for exercise, summer, beach, etc.  My hair stylist works with me and trims and shapes and colors my real hair so it all works together.  It takes a village!

Liz how much time elapsed between the start of FFA and the eventual minimal loss? I am trying to gauge where my FFA is at.

thank you Sad. It sounds like a big expensive procedure but worth every penny.

Hi Jen

I lost most of mine within the first year-18 months after I noticed it going. It had probably been disappearing for a few months before I noticed. I have now had it for 2 and a half years and in the last year the loss has been minimal. When I was losing a lot I could pull on my hair and it would come out without me feeling it. Now I cannot do that at all and so I assume its not active.

Liz, I really hope so. I live in fear daily of the big shed. Two days ago I actually counted the hair that fell out from my whole head during a shower. 104!! That is not counting what slipped down the drain.

Hi, Iwish I could say that I noticed my hair shedding, but I never have. I just noticed my eyebrows dissapear about 10 years ago and had them tattooed. I never felt itching or redness or pain or saw my hair fall out in the shower. I have always had a curly full fringe so I never really looked good at my hairline .I just began noticing that  my fringe wasn't "falling in the right place anymore" (sorry don;'t know how to describe that:) And that was about 8 konths ago and only last sept. I visited a derm who took a biopsy and gave the FFA diagnoses. It showed very little activity, but I cannot remember  how it feels when it is active. My guess is it was always very very slowly  active. I take photo's  myself every now and then to see whether it will progress.

I used to lose loads of hair when I showered. I have pictures somewhere. I used to take pictures it was so bad! Now I probably lose the same amount I did before I had this condition, 10-15 a day. I'm hopeful that it will stay like this.

Jen.....not that expensive.  I think I spent more on products and dreams of making my hair grow back or be thicker for way too long.  The real hair piece is fairly expensive at about $800.  However, with great care and follow up, after one year it is still in great shape, and again, a reputable wig maker will follow up and help with care, replacing clips, fixing color, styling for big occasions, whatever.  The synthetic one is $195 and worth every penny for those times when I truly did not know what to do while on vacation or working out.  My real hair expense of coloring, cut and style haven't changed and, unfortunately, since I have chosen not to go gray yet, that is a big expense.  Always was. But if you can afford it, get back your self esteem and feel ok about the way you look -- why would you not do it.  You can always go without another indulgence to pay for this one! 

Sad, I will be the mother of the groom this summer and I really need to look my best. I have to go to a wig shop and find a topper..

Good Luck.  You will be happy with your decision.

Hello, all.  I just purchased a topper, and pick it up on Saturday (she is trying to color the roots b/c I am very blonde, but have darker roots).  My problem is securing it.  My hair is pretty fine... and I struggle to have all of the clips stay in.  Any suggestions?  

Celia - glad you are still around and keeping active, I thought you had gone quiet for a while and wondered if you were OK!  Hope we may catch up again in the spring. Pam x

Lo -- the wig maker should be able to work with you regarding the clips.  That is their job.  Some toppers have a smaller mesh/lace base than others, and the clips can be re configured as well.  Backcomb the hair it will adhere to.

Hi Pam and all others who met up here last year.  I am still around and keeping active !  I would like to try to get 'local'  friends' over again soon if you would all be happy with that idea - I know I would !

I have email addresses for most people in the group who got together last year but would like to invite others who are close enough to the Beaconsfield junction on M25 to message me with your e mail address then we can make a plan. x

Donna i just ordered Cedarwood.  I didn't know Rosemary would help.  I'll have to order it next time.  I'm still using Clobetasol but i continue to have inflammation and itching.  I've lost a lot more hair in the last year but it doesn't bother me as bad as it did before i had my eyebrows tattooed.

I don't know how to get my sideways picture deleted from here.  Bad lupus brain fog day.

Apologies - senior moment - I meant near the Beaconsfield junction on M40 for a get together in a few weeks time - hope all who came last time are well.x

your picture is lovely.....do you wear anything or is that your real hair?  If so, I am very jealous, as it looks so full and healthy.  If not, great piece!

This was my hair last spring.  I've lost more since then.  At least 2" all around my face and an inch above my ears.  I have a great stylist that makes my haircut work until the wind blows.  If you were commenting on my picture i thank you Sad in chicago.  My derm gave me info on a great wig maker in Chicago.  She said it would cost over $2000.  I'll just wear a hat.

My dermatologist want to give me kenalog injections. Has anyone experienced bad side effects from this treatment and has anyone had success with this treatment.

Thank you for our input. Nancy

Brenda, are you in Chicago too?  I wear a beautiful piece I got at J. Krause in Skokie, nowhere near $2000, but excellent quality base and European real hair.  My hairdresser who colors and cuts my hair to go with the piece says it is the best she has seen.I cannot go without a piece anymore.  I did for about a year and a half, but felt it too stressful (wind, weather, always fussing)

I have been reading about those of you with toppers.  I bought one in July, and I must say I have not been all that happy with it because the clips are not in the right place and I have a hard time blending it with my hair.  It is made of human hair.  It was expensive - $500.  I have not felt I have gotten good customer service from the shop because when I went back to talk about the clips, I was just told that they are where they need to be.  Do you have any advice on dealing with wig shops?  This one was supposed to be the most reputable one in Denver.  

I have a hard time blending my hair with the topper because my hair is curly and the wig topper is not.  This means I have to straighten my hair.  Also, the hair underneath that hangs below the topper is fine and not as full as the topper.  I do get complements on the topper.  No one seems to believe it is not my real hair.  Maybe I am expecting too much.  

What is your experience with wearing a topper?

I have lost about two inches of hair in the front bang area and along the sides.  The eyebrows are totally gone.  I no longer can go out without a hat or wig or the topper. I have two wigs, but I'd like the topper to work better than it does.  

I wonder if you can put the topper in rollers so they would curl. I saw a video on youtube where someone was thinning a wig by pulling out some of the hair.  I know it is scary after spending so much for it.

Sallylwess, I have the same problem that I have curly hair and cannot find toppers that are curly (other than black curly hair). That's why I don't have one yet. I can still go without one, no-one notices, but I have  a harder time nowadays making my fringe look good. I never have had straight hair in my life, so I do not want to straighten it  to match  a straight topper. I am now thinking of letting maybe my own hair grow long so that it can be made into a topper/fringe. But I have no idea if there is a company who would do that.

sallywess - yes the topper (if real hair) can be styled; I "set" mine with velcro rollers to add height and volume (just the way I used to with my real hair).  The wig shop should find a topper that matches your own hair, color, texture, and style.  And, then they should shape it and style it to blend with yours.  I would bring it back and ask for either a refund, or someone there to fix, or do a better job of providing you with service.

Thank you Sad in chicago, and Sas Holland.  I agree with you about the topper.  I bought the first thing I tried on even as I knew I had misgivings.  I was just so grateful to have hair I was emotional and crying.  Never buy a wig or topper if those emotions overshadow the realities of the way the topper really works for you.  I have gone back and said it wasn't working for me and pretty much dismissed.  I was basically told I just didn't work with it right.  I think they only are interested in selling what they have on hand at this particular shop.  

Sas Holland, If I still had my hair like I did even two years ago, I would have seriously investigated having some of it cut off and made into a topper.  I had no idea about how much I would lose in a short amount of time, nor did I investigate the idea of toppers or wigs.  If you have the hair, see if you can have a topper made.  It will be an excellent decision.  I keep telling my daughter that I will pay her top dollar for her hair because it is so much like mine was.  Also, I do know that you need a lot of hair to make a wig, not sure about a topper.  When another daughter died five years ago, before I knew I had FFA, she had such beautiful curly hair, I asked if we could cut her hair and donate it.  I was told by the mortuary that they have to have at least five inches.  She had recently cut her hair, just before her death, to a shorter bob, not super short, but evidently too short to be enough for a wig.  

wow  Sallylwess, your story really touched me!

what a lovely idea of donating your daughters beautiful curls and how sad that it wasn't possible. I have 2 daughters and a son myself and I cannot imagine how it must feel losing one of your children. I think you are very brave woman and you look beautiful in your profile picture.

What a pity your other daughter doesn't want to cut her hair for you. If it where the other way around you probably do it for her immediately, that's how mother love works.

My hair does not grow very fast, I've tried very often to let it grow, but always stopped halfway through. I wish you all the luck in finding a better store with the best service for another topper,

thanks for sharing!

Hi Sallylwess & Sas, I have seen your comments that you were looking for curly hair that isn't black or dark. I found this link for a swim-hat-thingy and thought that maybe you could use that hair and get it made into a topper? http://hatswithhair.com/Order-Hybrid-Curl-Samples.aspx

Thanks Kat, I will certainly have a good look into that option!

Kat, that is very interesting!

Sallywess: Your story touched me too.   I also lost a daughter many years ago and can identify with what you may have experienced.  Fortunately, I too have other children (all boys) and they have kept me going.  Now I also have granddaughters and sometimes see fleeting reminders of my daughter.  Bless you.

My Derm wants me to stop taking Doxycycline in 2 months when I next see him. His opinion is "why take something you may not need to". But I feel that it manages my redness/irritation on the front of my scalp, and I may not be able to tolerate using Regaine (which is growing some little hairs at the front of my hair line!!) with the Doxycycline. Any thoughts on this? My FFA is quite slow moving so far but certainly still active. I have lost 1/2 inch at the front of my hairline in 1 year but my eyebrows have regrown with Regaine.

NatalieW, I think you should get the opinion of another doctor before you decide for sure.  I have stopped taking all topical at this time because I have allergic reactions to them.  I am thinking of taking plaquenil because I have used every other thing, except Avodart, available to try and stop the progression FFA.  I have lost a great deal of hair recently and it is attacking the crown of my head now.  I stopped using Rogaine because of redness and flaking, but want to give it another try.  

Oh Sally - isn't it frustrating? I have found Regaine to be quite helpful but it also does irritate my skin so the Doxycycline and topical help to control that I think. I am concerned that if I stop the Doxycycline for 3 months - I won't see the impact of stopping it until it is too late.

Hi Natalie, I have been on Doxycycline (1 low dose pill per day) for a couple of years now, and I understand your dilemma. I seem to have had good luck on the Doxy, along with Rogaine (Regaine), 1 Turmeric daily and now I have added Moducare. My FFA does not seem active now, nor has it for almost 2 years....so, I don't know what to think, but this "program" seems to be working for me right now, so I do not want to change it. I do not seem to have any side effects from any of it, except I am definitely more sensitive to direct sun. So, for now, I think I will stick with it. My doctor didn't seem to be concerned about me staying on the one low dose Doxy per day. I wish you the best with all of this...it is an incredibly frustrating and baffling condition!

Oh, and I do take a probiotic daily too.