Polly - you look great.  I've only been taking the hydroxychloroquine for 2 months, so would prob ably be too early for any significant side effects.

Hi all, I'm just wondering if anyone has had the symptoms I'm experiencing now.  My forehead is tender and feels tight.  I also have mild swelling from my hairline to my eyebrows. 

Hello Ladies, I've been away and am trying to catch up.  So good to hear from my cyber-friends again.

Annie, I hope you have now seen a doctor about those forehead symptoms.  Certainly sounds like a significant allergen reaction, and you need to know what treatment is causing it.  I hope you can clear it up quickly.

SilverSurfer, I'm sorry to hear about your eye troubles.  I'll be sure to have my retinologist check for that as well.  Thanks for the tip.  As for becoming a recluse, please-oh-please grant yourself the relief and contentment of a lovely wig.  I'm more of a GraySurfer, but we're never too old to do what it takes to feel good about ourselves!

Debs, thanks for the detailed report from your herbalist.  You're doing good things in your approach to a healthier lifestyle.  Sadly, there are many things there I cannot add to my system or regime, but I am intrigued by the 'tincture' you'll be getting to help control inflammation throughout your body.  Can you let us know what the ingredients of this tincture are?

Silversurfer, please do not do the recluse thing. Life is really too short. I cut back on socialising and spent too much time agonising over my hairline. I would still like things to be different but that is not going to happen. I am getting it together now and can tell people about FFA. Yes, I resort to a hat, use a scarf and spend time styling but I make myself participate. The rewards are worth more than the embarrassment.

Hi CJ, I have had FFA for over 10 years now. When I first noticed my hair receding I went to the doctor straight away. But not to bore you with a very long story, the nhs doctors at my local hospital hadn’t a clue and basically weren’t interested. I have recently seen a doctor at Guy’s hospital who I found from this site who is trying to research into ffa but even he was upfront and admitted there was no magical cure. I personally have never taken any of the drug treatments (not that I was offered them anyway) however if you read back over the correspondence on the site several ladies have with varying success. Some of us met up earlier in the year and this I found really helpful as one of the ladies has gone down the route of a hair piece which looked amazing, you really couldn’t tell. I know that that is the route I will next have to take. I didn’t want to write in a negative way I’m just being honest and I am sure the other ladies will tell you that we have all learnt to cope in our own ways.  If you think seeing another doctor will help go ahead . I know some of the ladies do see private doctors. It might be worth while putting a message out asking if anyone can suggest or recommend a doctor.

I hate my ffa but I have put it in perspective and I am just getting on with my life. I wish you all the best and if you just need to talk sometime you are welcome to private message me.  Meme

I do agree with the comments made by Meme. My FFA has been with me for some years, and at the end of the day you just have to come to terms with it, and not let it ruin your life too much!

I have been extremely pleased with my hairpiece, as it has done what I wanted ie make me look a lot better and give me back my confidence!

However, there are some obvious limitations as well, for instance, I couldn`t leap into the surf this summer like I usually have in the past! I can swim in the sea, but too much surfing in strong waves could just be a bit too much.

But hey ho, my friend can`t surf any longer either as she has had ear surgery which has gone wrong, and left her deaf in one ear, and sea water could cause further damage.

So we all have to cope with some issues in life, and the one I have been handed out is FFA. I hate it, but I won`t let it wreck everything for me!

Hello ladies.  I am due to see a new derm recommended by Dr Harries as I asked him to refer me to someone closer to home.  The name is Dr Iaisha Ali a female derm at Charing Cross - I see her in October.  Pam, your hairpiece did look good and I would not have known you were wearing one.  I know that Jules now wears one with success too.  Haven't quite got there yet.

Welcome CJ - whereabouts are you ?  Perhaps we ladies with close M25 access would like to get together again before the end of the summer ?

XX

Hi all. CJ I have seen Dr Farrant, Dr Harries, Dr Christos and recently Dr Sharon Wong at Hommerton hospital. 

In my experience all the derms I have seen know their stuff and the medications etc that they offer are all similar.

My personal opinion is find a derm who you like, one who you feel comfortable with and one who you feel at ease with. One who gives YOU what you need.

I prefer one who is warm and empathetic. I know others of you prefer someone who is efficient rather than warm. The one that works for you is the best one.

xx

Norfolk Girl - you will look and feel great once the eyebrows are done - they make such a difference.   Liz, I wonder which derm you are currently seeing.  I have seen no-one this year, am not taking any meds, just using dermovate and nothing has changed radically except I obsess on it less prob because I am not taking tabs every morning.  I wonder ?

I stopped all meds & even the Clobetasol for scalp.  However, I am prepared to start the Doxycycline 100mg again if I see intense shedding. It is a terrible condition but thanks to Liz & her sharing of the piece she uses, I knew what to look for &  have purchased & often wear the hairpiece. It gives me confidence & I have no worries in the wind. 

oh I forgot to mention I have an appt to have my eyebrows tattooed. Yikes am concerned as it is so permanent at least until touch up needed.

I still am taking absolutely nothing for the hair loss, except for the scalp injections which I still swear by.  I have more 'female pattern baldness' now, i.e. thinning on the top, but truly have not lost more than a few hairs from receding hairline recently.  It had receded about 3/4 inch before I got the diagnosis and started the injections, a little over a year ago.  Since then it has receded an additional 1/2 inch or so at the temples, in the first few months.  It has progressed less than that frontally, I rarely have any redness, and almost no itching at all anymore.  I hope that gives hope to some of our new ladies.

Hi Rita. It's great to hear that you are happy with the hairpiece you bought. It does make a lot of difference doesn't it :o)

C I am currently seeing Dr Wong at Hommerton hospital in north London. She attends the CARF meetings and I heard about her from Debs. My Gp referred me to Dr Wong and Dr Wong is happy to see me once or twice a year.

xx

Marian, I live in Ontario & purchased the hairpiece from Rochetti's. It has 4 clips on top of head. She cut it according to my length & a little bangs into it. Mine is titled 'EasiPartHd' (heat difiant clip in crown volumizer)  on the box it has a website with a toll free # in Canada and can perhaps guide you to a place near you.  www.easihair.com   Hope this helps.

Liz, what hairpiece are you using?  Is it one like Pam's?  I have still not found something yet.  I am in Kentucky....

My hairpiece was done by Rob Davidson-Lamb at Barefaced in Cheltenham Gloucestershire UK.

He has got a website with all his details. He does some things over the internet, and I guess it could be possible for him to order one if you could measure it youself and match the colour, and then fit it, but better for him to do it in person!

Forgot to mention in the email exchange with Debs (huge thanks for the brilliant fact sheet, Debs) that my derm has recently been to America to check out any new thinking on FFA.  She said that whatever treatment sufferers are using, it should be changed every 6 months and this has the most positive results.  No absolute model for success though I'm afraid!

Love Jean

Hey all! Thought I'd comment since I am in America. I'm being treated at Northwestern Medical Faculty Foundation in Chicago. I started steroid injections in January. I received them in Jan, March, and last week. I had an appointment in May but things were stable so they skipped injections (since they have side effects, as mentioned.) I noticed a flare up late July and she did document a little additional loss. I go back in six weeks. She calls FFA the bane of her (and many dermatologists) existence, since little is known about what causes it and there is no cure.

I am not taking oral medication. I use Lumigan (which is typically prescribed for glaucoma) on my eyebrows because it has the same active ingredient as Latisse...but insurance will cover it. My eyebrows seem okay. I have used both Fluocinonide .05% and Betamethasone Dipropionate .05% on my hairline. I haven't seen much of a difference in them but find the BetaDi has a more offensive smell. 

I am a pretty young "victim" of FFA. I would say it started when I was 34/35, but wasn't officially diagnosed until last year, right after I turned 36. I am not pre-menopausal. I had a DIFFERENT extremely rare skin disease when I was younger. I was hospitalized for chronic bullous dermatosis of childhood when I was 8 years old, and received treatment for it for about 1.5 years after.

I am very fair, with English, Irish, and Swedish lineage, which seems to be pretty common among FFA patients. My derm did mention they are now seeing it in all races and also in men. Maybe now that men are getting diagnosed we'll see a better focus on research! :)

Good luck to you all.

Kpengell, I think we might be seeing the same doctor at Northwestern. I'm wondering how long you used the Beta Dip before deciding that there wasn't much of a difference.  I am using that now after trying Clobetasol Proprionate for a few months and thinking that it didn't seem to help.

I also am of Swedish, Irish, English (and Scottish) lineage and coincidentally I also had a skin disorder of some kind in kindergarten or first grade, but I don't think it was terribly serious.

I'm also curious if anyone knows how long it generally takes for FFA to burn itself out.  Although I am recently diagnosed, I feel like I am in my third or fourth year.  Thankfully it does seem to be progressing rather slowly.

English, Irish, Swedish. . . most FFA patients women.  This sounds like the demographic for rosacea. . . which I have also struggled with since my late 30's, early 40's - when my hormonal balance started to get out of whack.  The more my female hormones have dropped the more issues have popped up--now this!

Anyone else have rosaca, seb derm - other types of inflammatory skin conditions?  I've always heard rosacea is chronic, progressive.  Possibly the inflammation has spread to our scalp/hair follicles from our faces?  This might explain why our eyebrows are often the first to go?  Drugs like spiro and also finacea have helped rosacea patients and they are antiandrogens.  

Linda from Cincy,  I'm also fair-skinned with Irish ancestry.  I've never had rosacea, but I have struggled with moderate adult acne since the age of 19, and have spent my entire adult life trying to control it.  I thought I had finally outgrown it, but the topical steroid I'm using for ffa caused  another flareup.  I've always felt that acne (or drugs used to treat it) are related to my ffa. 

I am also of Irish, English and Norwegian ancestry...pretty fair-skinned! I have not had too much trouble with rosacea, but have struggled with adult acne (cyst-type sometimes)...well, I did for many years during peri-menopause days...it has waned off now though. I actually always wondered about the adult acne (or the treatment I received for it...Retin A and tetracycline) and FFA were related since the FFA started right after the horrible cyst-like acne I was getting during peri-menopause. 

Annie, Maddy, thanks for sharing.  Sounds like you both struggled with adult acne which, like rosacea and seb derm, is a disorder of the sebaceous glands.

The sebaceous gland happens to be located in the part of the hair follicle that is attacked/destroyed in FFA and other scarring alopecias:  

     ". . .all cicatricial alopecias involve inflammation directed at the upper part of the hair follicle where the stem cells and sebaceous gland (oil gland) are located. If the stem cells and sebaceous gland are destroyed, there is then no possibility for regeneration of the hair follicle, and permanent hair loss results.

http://en.wikipedia.org/wiki/Cicatricial_alopecia

So, so. . .what??  I totally get we all need to be dealing with getting the inflammatory part of this disease under control but also want to just get to the root of the problem (no pun intended).  In all of the sebaceous gland skin problems the seb gland is irritated/inflamed by androgens, specifically DHT.  And calmed by antiandrogens.

Which is why I think a DHT blocker (like Dutasteride) may be the way to go altho' I do have serious concerns about taking something like that long-term.  Until I can find a doc who will consider prescribing Dut, I'm exploring more natural ways of reducing DHT in the body or topical rather than systemic DHT blockers/inhibitors.

I'm learning so much from this site and also lurk on the balding guy sites  (and swear I will never make fun of a comb-over again!!)

. . . also interesting that FFA seems to burn out when it reaches the area of the scalp where the hair follicles are not as sensitive to androgens as the frontal areas (receding hairline) are.

HI Clincy

I have mild rosacea and also psoriasis (hands and feet).  Although I am not fair skinned, I had Irish grandparents.  I think we are all frantically searching for links in the hope that we can come up with some form of comonality in order to combat FFA.  I'm trying not to let the disease rule my life and have had my eyebrows tatooed and just got a wig!

Regards to everyone

Jean

x