Hi - i am new to this forum. I was diagnosed almost 4 years ago with FFA and have been trialing different medications since. This past month I was started on Paquenil by my dermatologist after getting testing done on my eyes . I am hopeful this will help stop the hair loss as at this point if I lose  any more , I will have to consider a wig. 

This disease is very disturbing especially for women and since in my family , we all have ( had in my case ) very thick and beautiful hair , I find it even harder to accept.

I would love to have discussions with anyone who is experiencing alot of hot flashes and sweating as well . My doctor says it's menopausal but i am 70 yrs old and starting menopause at 49 with a hysterectomy so this doesn't really make sense to me . Also , I would like to know how many of you out there have had shingles in the past few years and if maybe that led up to thi s??? Just asking many questions to be sure because this is such a little understood disease. 

Hi GeminiJeanne

First - welcome to the forum. I have found it really useful, both as a source of information and also (perhaps more importantly) as a support. FFA can be a very isolating condition - it may not be life threatening and I know there are far worse things we could have, but still it is a very difficult thing to accept.

If you have time, scan through the comments across the FFA site - lots of different discussions.

I am 65. No hot flushes (I am pleased to say) but I did start getting excessive sweating on my head some time ago. Before I got an intralace system fitted (WONDERFUL!!) it was something I dreaded as of course the sweat made my carefully arranged hair all lank and damp. So the hair loss really showed, as did the sweat! Nice.

Whether the sweating is anything to do with the FFA I really do not know, but I certainly did not have it until a few years ago.

I have had shingles - about 12 year ago maybe. No idea whether it tied in with losing my hair.

But I did have lichen planus, which initially was incorrectly diagnosed as shingles in my mouth and throat - and that condition is definitely linked to FFA.

It feels, to me, like trying to put together a jigsaw when no one really knows what the pieces are. Only last week someone wrote on this site about a horrible rash on her forehead and it was a lightbulb moment for me, as I too had that before I got the hair loss. I am now convinced the two are linked.

But as to what else is linked, who knows?

One thing for sure, though - it almost certainly is environmental, as there was no record of it at all until the 1990s apparently. And research shows a link with sunscreen - or products, such as face cream with SPF. So I have stopped them.

Not a good thing to have - but we could have worse!

Keep smiling.

Denise

Hello GeminiJeanne, I  experienced hot flashes and sweating prior to my diagnosis at age 54.  However I was in menopause during that time, and also was diagnosed with breast cancer six months after my FFA diagnosis, so I really don't know which of those three things were responsible for the extra heat.  The sweating was much worse than the hot flashes.  I have not had shingles [knock on wood].  I find the possible link to sunscreen interesting, but I lost the hair on my legs too, and I don't really use sunscreen on my legs that often.

mel

A quick response as I am (as ever) dashing out! I had oral lichen planus, which is what I was first diagnosed with. VERY sore mouth and upper throat, small blister-like spots that would pop up and disappear, and (this is where the name comes from) white striata that looks like lichen. However, it was the soreness that I had most - it was chronic. I couldn't use toothpaste or eat anything remotely spicy.

And it was that, that was diagnosed initially as shingles.

Denise

MJ... I think we all have a combo of individual contributing factors... but it interests me to know that you also stopped tamoxifen, had tamoxifen induced menopause and then FFA.  That was my situation too.  At first I thought it was only loss of my eyebrows and I attributed it to the tamoxifen.  Maybe someday there will be a study about any linkage to FFA and tamoxifen.

I've lost my eyebrows but has anyone else struggled with dry eyes? A few years ago I went to an ophthalmologist who told me to wash my eyelids with baby shampoo and use warm compresses at night which seemed to help. He also told me to wash my face with baby shampoo as it looked like I had some early signs of rosacea! Interesting that rosacea is linked with FFA. Just wondering about the dry/red eyes and if anyone else had this issue.

I am noticing people with FFA more and more now.  I would venture to guess USA Olympic Gold Swimmer, young Katy Ladecki has FFA.  She's showing signs of male pattern baldness. What I find so interesting is, I bet she does not even realize it.  :(  Maybe they will find a cure sooner than later with so many people now being diagnosed.

I have not commented in a while but try to keep up with all the new news - I am so confused as to why I stopped losing hair as I hate that so many of you have not - I have gone back to the retinol night cream and serum from Roc as an experiment and have had no problem but I do not use anything with spf in it.  I have still been using mineral makeup but mostly as it does not seem to bother anything and I simply have not had time to do additional research.  I still take milk thistle and 4 b-complex stress formula daily and will say for those of you that are stressed that it is extremely helpful.  I also have been experimenting with rogaine 5% again - I had avoided putting it on the hairline above my forehead as the lichen simply never totally clears up - never does anything - no hair loss - no itching - just there - but this time I thought what the heck - much to my surprise it has almost totally cleared up the lichen - go figure - so I actually have started using it twice a day and putting it on my eyebrows - or where they used to be - as well - I am over three years from the shedding of hair and medication nightmare - for those of you that are just starting the lichen loves stress so please all take care of yourselves.  Maybe the lichen is just an indication that the hair follicles are starting to die and perhaps the rogaine stops that from happening - will report back later to let you all know what happens

I don't have hair extensions, but I do have an Intralace System, which is similar. It comprises a fine webbing with full hair, attached to my own hair (on the crown and sides) by my own hair being threaded through and extensions woven into it. 

Ordinary extensions wouldn't work for me, as all they would do would be to thicken the hair that I still have, and it's thick anyway. The issue (in my case) is the fact that however thick (or long) my hair is, it won't attach to the bald bits, so I will always have those seemingly acres of scalp showing once my carefully arranged hair moves from place!

So the Intralace works for me - and looks great. Very pleased.

As for the long term impact of having it (or extensions), I really do not know. I asked those questions, and of course, no one can tell you. But, again for me, that was a risk worth taking, as I felt I just didn't want to go on feeling as I did about my hair loss. And this was the best solution I could find.

So my advice would be to stop adding to the stress by worrying about it. If the extensions look great, enjoy them, and you will, by default, reduce your levels of stress as your confidence returns.

Good luck to you!

Denise

DeniceC, I finally took a look at the intralace system, I think, that when it comes time, that is what I will do also.  I had thought, other then my hairline that my hair wasn't too bad! But as I have been putting the Clobetasol on every night and lifting up different sections of hair and finally taking a good look at my scalp, I see it is really getting very thin in patches :-(

Oh and I finally have figured out how this comment wall works  :-) , I always thought it was comments made on threads that are posted, but then couldn't figure out why I was not finding these comments on the actual threads, duh, no, it is just comments!

I've had this piece of hair for six months now (the System remains in place on your head for two years before it needs replacing, but the hair that is attached obviously deteriorates, as it receives no nutrients other than through products you put on it). That's longer than I was told it would be, so I am very pleased.

It's definitely faded and is less shiny, but I would expect that.Still looks natural though.

So this morning my own hairdresser (not a personal one you understand! I'm not that rich!) coloured my hair (yes, I need it to cover the grey), plus, for the first time, the hair piece. It's brought back the shine and looks much better, but is slightly different in colour to my own.

Not a problem, as it's nothing major and also next month I am having the hair replaced (at Lucinda Ellory clinic) and they will match to my own hair. But it is useful to know that I don't need to go to them (about 1.5 hours away) to have colour applied.

I am now quite comfortable with the whole thing, and can't imagine being a baldie again (well, not a baldie completely, as I have plenty of hair on my crown - it's just the classic band across my forehead and above my ears that is sadly lacking). It's not cheap and you definitely need to go every six weeks to have it adjusted as your own hair grows and pushes the System up a bit.

But WORTH it!

Denise

Have a look on the web - Lucinda Ellory. I know they have clinics in NY and LA, and I also know (as I talked with Lucinda's son, who is the director of the London clinic) that they would like to cover more of the US.

Cost - roughly £1500 for the first appointment, where they attach the system and colour and attach the hair, and (obviously) style it. I was in the clinic for about six hours, but was plied with cocktails!

Then every six weeks you have to have the system adjusted as your own hair pushes it up - that's around £75 - £100 each time.

The first payment includes one replacement hair piece, so (I am assuming as haven't done this yet) I will just pay for the time. Or maybe not. Not sure.

And then every two years you have to have the same thing all over again.

In terms of other costs, I use the shampoo, hair mask and other products they recommend, but buy them on the internet - not excessively expensive.

And all of this is on top of the ongoing costs with my own hairdresser. This is a really important element, as my own hair is grey and I colour it. And of course the hair piece doesn't change colour, or fade, at the same rate as my own hair.

So it's not cheap, but it is good, and, for me at least, well worth it. No one who doesn't know I have had it done has a clue - to begin with I got lots of 'what have you done to your hair?' and 'your hair looks great. Have you had a new cut/colour?'

I know the company want to expand in the US and I told them about this site and how many people in the US were interested. So if their existing clinics are no good for you, email them and ask when they are expanding. The more people ask for it, the sooner it will be!

Good luck

Denise

It certainly helps to know there are many of us out there who know what you feel.

x

Well I'm staying up to date with everyone's comments and suggestions ! I will be seeing my dermatologist and family doctor next week and have a ton of questions for them about different treatments. I am into my 5th year of this disease and have lost every bit of hair on my arms , legs , eyebrows etc. I have lost about 2 inches or more around my face . I have tiny skin bumps and rosacea as well so it seems I am full blown FFA. My latest drug from the dermatologist is making my eyes blur but that's all. The itching still goes on regularly so I'm using Clobetasol for that. What a learning process this is. The first thing I've had to do is to come to terms with having much less hair. I purchased a human hair wig which helps to make life a bit easier. Some days I get so depressed about it all - thank God I'm on a anxiety pill daily - ( celebrex ) . Again , I wonder if it contributes to this FFA. I question everything I do now from my makeup to my cleansers to my food and medication. I wonder just whether or not any of these have a bearing on this disease. 

This support group has given me comfort in knowing that I'm not alone in this - although it seems not too many cases on here from Canada. I gather info from all your posts and try to sort through it all to see if anything can help or if I can pull some advice from the posts . Lets face it folks , we are grasping at straws because this is a disease with many unknowns . Take care everyone and keep your spirits up. 

Yes, I kind of stepped back from my laptop and gasped a bit when I saw the cost for the Intralace system! I do have some time, I think, I hope, or maybe I will never need it, but it is good to know there is that option. I am about 2 hours north of NYC, so that is something to consider besides the price, do I want to travel down there every two months.

BU US Illinois, how I wish I could wear headbands and scarves :-(  No matter how I try I just look dopy.  I actually have a collection of scarves, because I love them, I just can't wear them, I do envy people who can carry that look off, lucky you!! 

Geminijeanne , yes, it does feel like grasping at straws with FFA :-(

@Sad in Chicago, did you get your Intralace system and how do you like it?

Ohhhh MnM, I'm glad I am not alone in being headband/scarf challenged! :-(  I wish there was a class I could go to on how to wear them stylishly :-) I do have a couple of baseball caps, but the problem is that once it is on my head, it's on for good for the day, as otherwise I am stuck with hat hair, sigh.  Maybe I should try a jaunty beret instead!

Interesting, isn't it? On the one hand, we need the extent of this condition to be established and publicised, so more is done - not only for us, but for the next generation and the next, because if it is environmental in origin, then it is likely to hit them more.

Yet on the other hand, it is so demoralising and challenging to confidence, we all hide it as much as is humanely possible. I had never heard of FFA until it happened to me and even then I was misdiagnosed to begin with ('it's your age, dear').

At the Olympics, one of 'our' Team GB cyclists - Joanna Rowsell Shand, gold medal winner in the team pursuit - clearly has alopecia. She completed her rides bald, and then accepted her medal bald. But then, commentating on the BBC for the rest of the cycling programme, she had a wig.

I understand that - and I strongly believe it is every woman's/ man's choice to do whatever they choose, but it is possibly yet another message of how difficult it is to accept alopecia as a condition.

That's why this forum is important.

Great- really positive and excellent that you have found something that works for you.

Scarves for me are DREADFUL. I look like an old peasant!! On other people they look great - my daughter who has perfect hair, wears one sometimes and she looks stylish and sophisticated, not in any way silly. Sadly, her mother does not look the same!!

CurlyK, I am glad to hear you have told your boss & his wife, I found that once I told one person, it was easier and easier to talk about it.

Also, Aurghhhhhh!!! Scarves!! I do wear a bandana under my helmet when I ride my bicycle, but that is as far as I've gone to wearing them in public.  FFA or not, I've always wanted to be able to be a chic scarf wearing lady, sigh :-(  maybe I will try one of those pre-tied ones too!

Denice you've hit the nail on the head about this FFA.

I think it is really important to keep on posting on this site, as we have no idea how many newly diagnosed people find it, and is so very important for them to realise they are not alone (sounds melodramatic, but it's true).

Sometimes I think 'here I go again' when I post (as mostly they tend to be long - I am a writer!) (not professional, I hasten to add), but then if when I/we post helps even one person, it is worth it.

x

Hi to all. I am north of Toronto , Canada - wanted to point that out for some other fellow canadians here. We do need to get this site out there for other sufferers of FFA or alopecia . It's vitally important that we make it more public because I'm certain there are many cases that are being misdiagnosed or just fluffed off as post menopausal conditions. My own doctor thought at first it was all a post menopausal problem. Interestingly enough , stress is a very important factor in managing this disease. I am a very anxious person and have been treated for many years for anxiety. Does this play a factor ? I wonder about that and many other things -  are there medications in the past that might have triggered this? I did have shingles in 2009 which I am certain contributed to many of my ongoing issues. I would love to see a study done to try to find out the common factors amongst sufferers of FFA. 

Anyhow , for all of you who are new to this site - it is wonderful and helpful and inspiring so keep in touch . I am learning to deal ( most days ) with this disease - it always could be worse I say - chins up folks !!

Hi to everyone. I cope with my ffa/llp hairloss mostly by wearing my hair in bangs, although they are thin and probably don't hide as much as I'd like. I also wear headbands over my bare spots and drape my bangs over it, or pull it back in a ponytail. I have quite a collection of stretchy type headbands. I also keep a baseball cap handy just for running in and out of the store or when I watch my son play soccer, or out for a walk. I've never really tried scarves, seems like too much material for me.  I've not tried any hair pieces yet, Don't know if I can afford the expense and upkeep of that. I am currently taking methotrexate to help keep inflammation on my scalp down. I also take meds for blood pressure, and thyroid. I hate taking all this stuff but i have to I guess.   Hope you all have a lovely weekend!

Hello all,

I have not written in a while.  First to the questions about the intralace piece I was considering through World Hair Inst., I did decide not to proceed with that.  One, VERY expensive, two, I could not get to that location easily, and three, I couldn't find anyone else with one (although they did give two other ladies my number who called me as a reference, both of whom were happy), but I could not meet or see any of the results and so I was nervous.  However, the place where I got my wonderful clip in that I wear everyday is making up a new piece for me that has more hair to cover our lack of, specifically along the hair line and in front of the ears.  It is being made now, custom, and I am excited for when it comes.  I will keep you posted, and interesting it was about $1000 less than the first one I priced and thought about.  Also I found another venue in Arlington Heights Illinois where they also are very good with hairpieces and wigs and are doing another custom piece for me as well.  So, all in all, I am getting TWO pieces (to wear at different times) for the price of the one.  I am also looking into tatooing my eyebrows.  It scares me, but hopefully it will be fine, as I am so tired of everyday trying to look "normal" even to myself, and when at home, besides work place and social, etc.  I have been trying to  enjoy the summer, but dealing with the hair loss while perspiring, walking, hanging at the pool, has, as always, been a total drag.  And planning vacation now to Mexico, oh my!  Hope my new pieces work out.  

To newly diagnosed sufferers:  save your money and time and do not try to reverse or grow any more hair....won't work.  Instead find good places to help you camouflage your loss if that is what you want to do.  Yes, expensive, yes, timely, but worth it.  I started out as KarenGinny with bangs, caps, etc., but eventually, found that the clip in pieces are the way to go for me. 

I miss wearing my hair up so much! Especially in the summer. I can get away with using hair powder to fill in my sparse hair line and I am able to pull down some hairs to frame my face but I wish I could just pull it back with all of hair out of my face like I used to. I guess I should be glad that I can still use some of my hair to cover up. But it is getting harder. Sigh. I just wanted to vent. 

MnM -- Yes, please keep me posted on your eyebrow progress.... I understand the first few days are difficult and they look very prominent, so I am anxious to understand the healing timeline and how they ultimately look.  Thanks!

Sad in Chicago, thanks for sharing the information about your experience with the interlace system in Chicago.  I would have made the same decision you did for the same reasons.  Personally, I am much more wary of wigs, hairpieces, and systems than I was when I first began this journey as a naive and desperate woman seeking ways to fix my hair problem.  I spent too much money on bad fixes.  Now, I am better informed thanks to my own bad experiences and the wisdom of all of you.  Sad, where are you getting your new pieces?  Do you feel comfortable sharing specifics?  You can private message me.

I no longer can clip in the hair piece I bought that I am wearing in my profile pic due to hair loss on the sides.  I now tape it in.  I have a consult tomorrow because I have lost so much hair that I have to come up with a new plan.  I think it is wise to have two pieces.  One worn often gets tired looking, and I get tired of looking at it.

As for eyebrows - I had mine tattooed in New Orleans when I was there for the CARF conference.  I could not be happier.  They make such a difference.  Do your homework before you do the eyebrows.  That is my only advice.  Otherwise, I wish I'd done them sooner.  

As far as I know, this is the only autoimmune thing I have going on, though i am sure there is probably something or will be something else coming along soon!!! I don't think I ever mentioned it, but my mother also has FFA, though they told her she has a form of Lupus, she has all the hallmarks of FFA.

I don't put my hair back in a pony tail anymore either, I got about 4 inches cut off 2 months ago because of this FFA (though at that time it was undiagnosed) so now I have a bob and don't have to put it back. I was sad to cut it off, but I was worried about losing more hair by pulling it back in a ponytail, plus it just put the big spotlight on my missing hair when it was back :-(