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Comment by Sad in chicago on December 26, 2017 at 5:37pm

Yes I had a biopsy, and was mis diagnosed at the time with female pattern baldness, by a very fancy, hair specialist dermatologist and so what, she was wrong!  Another derm diagnosed from just looking at me!  Pass on the biopsy.  It is painful and won't change anything.  And as far as references, I meant from the hair replacement salon you choose.....and then you will find new friends, who are going through the same thing as you!  

Comment by Halfbakedwho on December 26, 2017 at 2:01pm

Yes I want to start the pieces now, although my family says they can’t see it, the top of my head is really showing quite a bit of scalp - all the more noticeable since the rest of my hair is thick and curly. No, I’m not stopping the meds yet, but like Sad Chicago I’m not interested in Plaquenil, and though Madame Dermatologist wants me to have a biopsy in March - I’m kinda not interested in that either (to what end exactly??? Sounds just yucky and painful).

The hair-pieces seem to not come in extra-curly : /, and there are those who say they damage your existing hair... though my God who the hell cares if it means looking okay?  

I really like the idea of a trip to London every few months for my hair (to put a positive spin on it all : ) ! ) We could organize a FFA London road trip LOL. 

As far as getting references - I know absolutely no one who has this condition like me, know no one who has any alopecia aside from my husband who, quite ironically, has complete and total alopecia since 2014. Not a hair on his body - nothing, nada - comme un bébé lapin tout nu I tell him. But he’s a guy, and he totally completely doesn’t give a sh-t. Good for him : ), but I really don’t want to join him there...!

Comment by illustr8r on December 26, 2017 at 1:42pm

@HBW I’m not advocating stopping your meds-I just wanted to let you know I’m not taking anything now. I have Clobetasol if I get a big pain or itch but otherwise-nothing. I’m using castor oil every night on my thinning areas and I’m seeing new “sprouts” coming in around hairs where there haven’t been any in a long time. My hair seems to have a wee bit more body too. I had to stop the AIP diet but I’m still cautious with the gluten and dairy. Got forbid there’s a breeze but my pixie cut is working for me. This stupid disease waxes and wanes-I’m in a good phase waiting for the tide to turn. All the best to you.

Comment by Sad in chicago on December 26, 2017 at 1:39pm

And start the pieces now, even though you may not need them much at this point.  That way as the loss increases you are able to maintain your "look" without a noticeable change later as the pieces get larger.

Comment by Sad in chicago on December 26, 2017 at 1:37pm

Glad you are able to find some resources.  Words of wisdom:  Ask them for references and find others who work with them to make sure they are satisfied with outcome, that the resource allows you to come back as many times as needed for "adjustment" or tweaking on fit and styling upon first receipt with payment.  As you move forward there will be additional charges, for coloring for example when it fades, just like real hair, of course.  Do they customize?, do they order out, or have everything in inventory, will they color at your discretion?  The answer to all of this is yes for the places I have worked with, but you should be sure too.

I too am off all meds.  I have been told unequivocally there are no cures, ways to lessen the loss, or anything you can do about this.  I started with rogaine, propecia, and some cortisone.  None worked and I would not take the med prescribed for malaria that some try.  Just live with it and take care of yourself and get some good pieces, or whatever, that make you feel good about yourself as best you can.  

Comment by Halfbakedwho on December 26, 2017 at 12:52pm

http://www.markglenn.com/female-hair-loss-faq.htm

This looks amazing too... FYI

Comment by Halfbakedwho on December 26, 2017 at 12:33pm

OH YES I think I found something - custom hair extentsions in my town.I am so relieved. I will call after the holidays - just for the consult, just to know my options. The medicines I’m using are a jjoke - my scalp seems totally unimpressed by my efforts to slow this down - on the other hand, if I weren’t using medicine, where would I be with this? If I have the hair piece option - I may take the chance at stopping the chemical warfare. And I gave up the no-gluten no-dairy - I have really no idea if it was helping or not, and living here it was just so hard (well living anywhere I suppose). But dairy is not so great stomach-wise so I’m going to go back off it. 

Comment by Halfbakedwho on December 26, 2017 at 12:16pm

Wow, Sad in Chicago,  that is quite a story, and I get the irony - I can relate a lot. I too am finding this whole thing kind of unreal, unbelievable surreal really (that’s a lot of real/unreal lol). But now that I have had the first flare-up since I’ve started paying attention to this (about last Apris), I see how fast the hair can go - and I don’t know what I’ll look like in six more months. I ask this question (yet again, b/c I think I dost repeat myself...!) b/c I went to see a hair specialist a couple of weeks ago who just told me there were NO OPTIONS that she could see for me (not enough hair loss for a wig, and I think she had no imagination to think of wig pieces!!). I’m going to turn 52 in February, and hope to work for another 15 to 20 years. Like just about everyone, appearance counts in my profession, though I don’t need to be beautiful - I need to be « normal looking ». My natural hair is a very curly, and medium brown with blond highlights. I don’t know if this exists in a wig piece but of course if need be I’d change color. So far very little grey, but God knows I wouldn’t mind being completely white  if I could have all my hair. Thank you both Curly K and Sad for your input. I am going to have to shop around in my area some more for someone a bit more helpful (I live in France - a good and bad thing, like everything ; ) ! )

Comment by Sad in chicago on December 26, 2017 at 9:59am

I started wearing "pieces" four years ago.  At first I had enough hair in front for the piece to be clipped in front and back and it blended in with the sides and back of my real hair.  As time progressed the loss became bigger and eventually I needed to lose the clips in the front and sides and move to tape while the back still clips in.  I have several pieces now, one of which was actually a wig, custom made to fit my loss and still clips in the back with wings on the side to cover my side loss.  My wonderful hair loss expert/hairdresser who specializes in our issues has worked with me for the last 18 months. 

So here is the thing that is so ironic.  I have never looked better in my life (I am 70 years old!), as the hairpieces are full and dyed to match my original hair color (I will never go gray!).  Everyone thinks I look so wonderful, don't really realize it is my hair that does it, and I know I am a total fraud!  I don't want to bond as I am always so happy to remove the piece in the evening before bed.  I cannot imagine taping or gluing for five weeks at a time.  On the other hand, when I am home with my husband, I am pretty ugly and embrassed too and scared what if the doorbell rings, so I keep the piece on til bedtime.  

My pieces are human hair and I take very good care of them. I know I am fortunate to be able to afford them, as I am still working.  But the whole thing is unbelievable to me that this happened.  I am really trying to handle it well, and as time goes on, sometimes it becomes more natural to deal with this, but every once in a while I start freaking out and emotionally I am back to square one.  Simply put, no right or wrong answer, but it sucks. Also, just for interesting points, I never had pustules, or anything.  Just wierd itching and sudden loss which continues to progress.  Finally, every city should have at least one place where they specialize in hair replacement; if you google, or even ask your regular hairdresser, I am sure you will find someone.  I started with one place and moved on to another after a recommendation from the lady who did my permenant eyebrows (lost those too!).

Comment by CurlyK on December 26, 2017 at 8:32am

I got my hair piece at Custom Hair Tampa Bay here in Florida USA. It’s custom fit to my scalp and is bonded to my scalp for five weeks at a time. I go in like any other salon appointment where Megan removes the piece, cleans it and washes my scalp and remaining hair and then re-bonds it to my head. I sleep in in, shower in it, wash and style it like a real head of hair. The hair is real human hair and the color and curl is matched to my real hair. To find a place near you, try googling “semi permanent hair” or “bonded hair piece”.  I’ve been extremely happy with this option. 

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