I know exactly when I started FFA. It was one month after my husband's death I noticed two round spots one by the widow's peak and the other behind the right ear. There was a third tiny spot by my right temple. I did nothing for 8 months thinking it would come back. After 8 months I showed it to my derm  who diagnosed and injected immediately. Within a week, I lost my entire hairline in the injected areas. About one inch. Then later I lost around the ears. I also have a dent in the right temple. I cover it with hair that I pull forward. I do not want to take any drugs internally since my family have a history of several life threatening illness. Since the injections are causing dents and the hair is falling out anyway, I will not be seeking continued treatment. I am trying to concentrate on hairstyles to disguise the choppy hairline until I can no longer disguise it.  I am interested in hearing from anyone who have used hairpieces effectively.

Love to all you brave girls,

Jen. 

Hi Kaz, Welcome to our group.  Sorry to hear about your ffa diagnosis.  I was diagnosed in March 2013 & have been taking Plaquenil for almost 11 months.  My doctor started me off with one pill per day for two weeks to allow time for my body to adjust.  I have been taking it twice a day since then.  My side effects have been minimal.  I had strange (not scary) dreams and a little trouble falling asleep for the first month.  My blood work has always been fine, & I haven't had any trouble with my vision.  I think the Plaquenil and topical steroid combination I'm using are helping, but it works so slow that you barely notice.  My scalp is much less tender than a year ago.  It took me about nine months to see a change in the hair loss.  I'm still shedding, but not as much.  Good luck to you and God bless.

MJ, I have continued to have hair loss, more slowly, even though I am not having injections.  The most intense losses occurred at the injection sites within one week of treatment.  I think that for me the injections are accelerating the loss plus the area is completely bald. The areas of loss where no injections were done  can be disguised somewhat effectively with dark eye shadow. 

Mandy, thanks for the long anticipated encouragement!  We all want to know someone whose condition has stabilized.  So happy for you.

On a historical note, I imagine many may have already noted the obvious resemblance to FFA seen in portraits of Queen Elizabeth the First, of 16th century England.  Just thought I'd share with you a link to a series of her portraits, as it appears she was already losing hair at a very young age.  In 1546, when she was just 13, she had begun looping her side hair forward, in an attempt to cover the bald temples.  Just for fun: http://www.luminarium.org/renlit/elizface.htm

I suppose it's a plus to be related to Royalty?!?

Hi Jules,

Thank you for letting the group know about the hairpieces. I was thinking of you only yesterday and wondering how you were doing with it. You must have heard me thinking.  How do you think the piece would have worked if it was placed in a more conspicuous place. You mentioned that you still comb your hair over the piece. My hair loss is at the temples mostly with a bit at the top.

I am still very pleased with my hair pieces, and have got used to them. They have really helped my confidence a lot. Just had a photo taken on a windy ferry to Calais, and it was wonderful not worrying about bald sides and hairline!!

Hi Pam,

Thanks for your comment. You have had your pieces for a few months now so I am happy that you have gotten accustomed. Are the edges (here they meet your face) invisible or visible? Can you comb your hair back and have a natural look? I live in Canada and I am not sure where I can get a service like what you and Jules were able to access.

It should last about a year, so far I have had it for six months and all is OK. I have had my hair cut and coloured, along with the hairpiece, and its honestly impossible to see the difference between my own hair and the piece. I need to comb it out slightly more carefully after I have washed it, and use a conditioner to stop it tangling up. Just like you would use anyway really. It is actually so nice to have some more hair to play with, I can use heated tongs and blow dry it in waves!

The edges are not visible, but if I scraped my hair back then they might be visible to the trained eye!  I just think of it as my own, and no different from other cosmetic enhancements such as hair extensions, breast implants or botox - just a great beauty aid to make me look a lot better and feel good about myself!

Hello everyone, Iam sorry for not replying earlier to you MJ, I have been away.

Yes I have had FFA for 10 years now. I suppose I have lost about one and a half inches from one side of my head to the other. So I suppose you could say it has gone slowly. So slowly that friends and work colleagues that see me every day haven’t really noticed a problem until recently. I do wear my hair with a side parting and flick  it over my forehead, which works to a point.

I find that the loss goes in phases, but I cannot say it has ever been in remission.

I met Pam earlier this year and I can confirm being absolutely staggered at her hairpiece. You really could not tell it wasn’t her normal hair. My daughter thinks its time for me to face the next phase and contact Pam’s hairdresser, which I have promised myself I will do this summer.

Best wishes to all

lying

Pam, what would you call this hairpiece?  I called 2 wig salons asking them if they carry something for this condition and described the loss and was told a full wig sounds best.  I don't agree.  I purchased a full wig and rarely wear it finding it binding and was not that cheap $450.00 CA.  It does look good so only on special occasions.

Marian I am in Toronto. Rita I went to Trade Secrets in the mall and was told to chop off my hair and purchase a wig. They did not seem interested in helping my specific situation. I purchased Jessica Simpson bangs as they recommended and it does not work for me. I think the best solution is Jules's and Pam's solution if I can find someone to replicate. It has been 4 years for me and I have lost about 1.5 inch at the sides and top and more around the ears. There is also a big patch between the nape of the neck and the right ear. I do not really worry about the last one because of the location.  Jules, I was thinking of you and how the piece was a bit dry. My natural hair is corkscrew curly and very dry. I have to put oil and leave in conditioner. I also wear a headband around the hairline to bed even before FFA. This way I do not rough up the hairline while I sleep and cause more frizz. This headband is useful now that I have ffa because I comb wisps of hair forward and place the hairband over them to keep them in place while I sleep. I also add dark eye shadow in strategic spots and pull the wisps over the eye shadow. Those are the tricks that I use that work for me right now. later on I may have to resort to more drastic measures. Thank you Jules and Pam for sharing and thank God for your hairdresser.

May be a good idea to just check/enter the Continental Hair reviews, then choose

Continental Hair topper HerAlopecia.  Can't hurt to be aware of any pushy salespeople.

Pam, does this hairpiece stick to the head?  If so, would you have to shave off any stray hairs in order to apply it?  My hair loss is all right smack in the middle, front of my head.  Do you think a hairpiece would work for me?  Not to that stage yet, but just preparing myself.  Thanks!

Questions about WIGS - I've been following the discussions and have 2 questions. I have not yet begun even looking for a wig, but these 2 thoughts pop up every time I think about it.

What is meant when anyone says 'it will last 6 months' [or whatever timing].  What exactly happens that tells you it's the end of that piece's useful life?

And something I've not  heard anyone mention: what does your head/hair look like when you remove it at night [your hair, not your head!].  Are you embarrassed to face your husband or partner?  I think from the very beginning my sadness was not so much for me and my hair as it was for my sweet husband, to wake up with an old balding lady.  He is very supportive, and would deny that it bothered him at all.  But  I think, of course he would at least inwardly wince.

Right now, my hair loss is not visibly significant, so I don't need a hairpiece.  But the texture of my hair has changed to the point that I'd probably look better in a wig than anything I'm able to do with my hair.

Hi ladies. I have a clip on fringe, half wig and full wig. I am happy to send  before and after pictures to anyone who is interested in how they work, what they cover and how they look. I love my clip on hairpiece. For me it has changed my life and would recommend it. I no longer post pictures on here because once posted they show up in any google image search but I'm happy to email to anyone who is interested ;o) 

Wow, Jules!  I never imagined you could keep it on that long!  Very encouraging!

Liz, I will leave a message on your profile page, if you really don't mind sending me pics.  You are so kind to offer.  And I am so glad to know just how happy you are with all your new hair!  Thanks!

Anne

Hi. I had 3 friend requests this morning 2 of whom had written their email addresses for me to email some pictures to. Unfortunately as soon as I had accepted the friend requests the email addresses disappeared :o( Please could those who want pictures message me their email address again.

MJ, if you request me as a friend and then message me privately the message stays private. 

Thanks xx

Hi All.  Not sure what happened, but my link to this discussion has not pulled up ANY posts since last Saturday.  Can't believe all you ladies have been silent that long!  Any idea how to rescue presumed lost posts?

Test post - hi y'all -- just seeing if the post goes through.  No need to reply. 

Thanks, Jen.  Came thru alright.

Must have been a blip.  All that talk of Avodart !!  I lost all prompts to look at posts for a while too.  I go to an old message to get back in - strange.

Ladies, we are approaching 2 years now of communicating on this site............................. June 2012 it began.

I believe we have all learnt from each other and have given and received wonderful support.

It would be great to hear from friends who haven't spoken for a while here.  Perhaps you have moved on somehow - that's good.

Best wishes to all.

Cekia,

Thank you for creating this forum for us to use. It is much better to have contact with FFA sufferers and share coping skills. Thanks everyone for your input.

Hi everyone

Reading comments from fellow sufferers has kept me sane!  We've just returned from Italy and I've been bitten to pieces by mozzies (no hair on arms or legs).  I had to get antibiotics when I got home because I seem to have a reduced capacity to fight infection.  The FFA is very slowly advancing but I'm determined that it won't take over my life.  The information on 'part wigs' has been particularly welcome so thanks to you all for your helpful and positive comments.

Love Jean

Jules - I have completed this but have no idea how to send it on - or to whom. 

MJ, I had surgery (not real minor either) in early March and had no flare-up of my FFA. My surgeon had me take Arnica and Bromelain a few weeks prior to and after surgery (and had me stop all other supplements) to reduce the inflammatory response. It worked wonders for me.

Jean, That is interesting about your reduced capacity to fight infections. I posted a long post under the topic "Could Antibiotics be a Trigger for FFA," regarding the fact that I was recently diagnosed with Common Variable Immune Deficiency," Subclass 2 and 3 deficiency...which my doctor indicated could, at some point, make me have a reduced capacity to fight infections. So far, it hasn't, because my other two immune systems (subclass 1 and 4) have been compensating, but at some point that will probably stop. 

Jules & all, there's a good reason the cetirizine [generic for Zyrtec, Alleroff, Piriteze] seemed to work for your bladder infection.  But you'll also need to remain somewhat vigilant to your bladder's cues. 

One of my most difficult autoimmune diseases is Interstitial Cystitis [IC].  It was diagnosed 17 years ago, though it evidently began sooner.  Throughout adulthood I suffered with chronic bladder infections, as many as 6, 8, 10 a year.  As a result, I was prescribed way too many antibiotics, developed allergies to some, total resistance to others.  It is thought this may have contributed to my developing IC, in addition, of course, to my susceptibility to autoimmune disorders, including FFA. This goes to the Discussion thread that Anne Louise began about the use of antibiotics.  I just hadn't gotten to writing it out on that one, but feel compelled to now, based on Jules' current problem.

The result is a sort of laceration of the bladder lining, with intermittent minor hemorrhaging. The symptoms are very much like what most people call "cystitis", i.e. a bladder infection.  Except in IC the discomfort never leaves, there is NO infection, and no cure.  So there won't be that tell-tale proliferation of white blood cells in your urine.  And in fact, a urinalysis will show nothing, and a urine culture will be totally inconclusive.  The only way IC can be diagnosed is by cystoscopy with hydrodistension.  Don't need to go into that.

But the important common factor is that the physical symptoms of urgency, burning, etc. are caused by a histamine / mast cell overreaction.  So any antihistamine will calm your bladder down [but of course, only temporarily with IC].  I have been on 100mg hydroxyzine antihistamine [brand names Vistaril, Atarax] since 1998, and still have considerable break-through pain, for which I take many other meds. 

The benefit of that strong and constant antihistamine is that I think it has spared me the relentless itching scalp which is FFA's histamine reaction.  [not to say my head never itches, because it does fairly regularly, all around the active areas, but not to the same degree some of you seem to experience, particularly PamW I think].

Yet taking all that antihistamine so long obviously did not spare me developing FFA in the first place, as that is a fairly recent development [diagnosed 10 months ago].  Which confirms [in my mind] that the histamine reaction is a symptom, not a cause.

By the same token, Jules, you need to be aware that taking antihistamine for a bladder infection, you may be eliminating the histamine reaction, and therefore eliminating the symptoms.  But you have not necessarily eliminated the infection. [to be continued] ...

CONTINUATION

For any of you ladies who have frequent bladder infections, I strongly recommend insisting on a urine culture [not just a urinalysis] to determine if there is any live bacteria causing an infection.  If there is not, please DO NOT take broad spectrum antibiotics "just in case".  By all means, take over the counter [or even prescription strength] antihistamines, and also Phenazopyridine [brand name Pyridium] or others that color the urine bright orange, in order to calm the bladder.  [One of my other prescriptions turns my urine bright blue!  But it has no effect on the IC disease, just helps control the symptoms.] 

Sorry to have gone on so long with this, but as we all now know, when susceptible to one autoimmune disorder, we are susceptible to many others.  I would hate for Jules to feel 'cured' of the bladder issue through the use of antihistamines.  There may still be infection lurking.  And on the other hand, if the symptoms keep returning, you need to be certain that there IS infection before you start taking multiple antibiotics.

Whew!  Off my soapbox now.

Best wishes to All,

Anne