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Comment by Lo on January 26, 2015 at 4:48pm

Yes... annoyed is better!  You are so sweet for sending back so quickly.  My email address is lobertella@yahoo.com if you want to send a picture... I'd be happy to send one back.  My hairstyle, as it is today, it goes completely unnoticed.  But... I have to face the fact that it won't forever.  I guess I was hoping that with the start of this being in 2010, that it had reached its "burnout" stage... because it hasn't gotten that much worse, and the only patches I am missing are above my ears... (nothing along hairline yet).  Does it actually turn into an actual "band" of hairloss?  I wonder if anybody ever had it reach the "burn out" stage w/out actually ever losing a whole bunch... Ugh.  Thank you for your quick responses... you are helping me more than you know today.  God Bless. 

Comment by Jen on January 26, 2015 at 4:46pm

Hi Sad in Chicago,

Would you mind sending me a picture of your clip hairpiece also please? I think my  may be about the same as you have described except the areas above my ears are worse. Also the back of head has lost a bit at the hairline.

Thank you in advance.

Comment by Sad in chicago on January 26, 2015 at 4:38pm

OK, not as sad as I used to be now that I am managing this all a little bit better.  Maybe a better name would be ANNOYED!  So, how do I send an email through this blog?   Not that much of a techie.  Let me know and happy to help.  

In the meantime, I would say my hair loss is back over an inch, if not more. My forehead on top is a shiny mess.  I do not at this point go out without one of my pieces unless I am wearing a cap -- I prefer baseball caps to hats.  In winter I might wear a wool type cap with what is left of the sides sticking out, but I was always a bangs person so I think I look funny without anything on my forehead. I guess I have been dealing seriously with this for two years before I got the clip in.  I was always pushing my hair forward but it got to icky and fuzzy and did not look appropriate, plus I was always worried about the wind (being in chicago).

I have a good hairdresser and the pieces I got work pretty well.  Sometimes I feel like you can tell, but I have been assured not.  I think you never get used to this.

Comment by Lo on January 26, 2015 at 4:26pm

Hey, Sad in Chicago (I wish that you weren't sad... don't even know you but my heart goes out to you).  Would you mind sending me photos of the hair piece?  And would you also mind telling me how far your hair has gone back - and in what amount of time?  That information would be helpful.  Could you get away without your hair clip in?   Many thanks... more than you know. 

Comment by Sad in chicago on January 26, 2015 at 4:13pm

Lori, unfortunately you are following in the footsteps of most of us....slight eyebrows left if any, all face fuzz, leg and arm gone, and a band across hairline of loss.  My best advice is to start getting fitted for a clip in hair piece now so that it is not apparent when you really need it; it will cover your hairline, crown and depending on fit the the sides over your ears as well.  I have two.  One very expensive real hair that I take very good care of and another one for summer, working out, etc. that is synthetic and looks very good too but is much less expensive.  Start learning how to define and draw in your brows now with pencil first, then powder, and finally, I use a diffuser which makes the powder stay on and look better.  

This is the worst thing ever, but if you figure out how to look your best when you have to and start experimenting before you really need to, you will do better than I did.  It is difficult for sure.  

Hope this advice helps; please comment back for more info if you feel you need it.

Comment by Lo on January 26, 2015 at 3:45pm

Good afternoon.  I just joined this group today... and, well, have been having an up and down week to say the least.  About 5 years ago, my hair dresser found a small bald spot above my ear.  I never noticed, because I wear my hair in a shorter inverted bob.  I went to the derm, and he said alopecia areata.  Scared, but figured I would be okay.  No treatment except some cortizone shots in my eyebrows (which had also started to fall out).  Fast forward 5 years.  I have 2 spots above my ears (about an inch back), and aside from that - not very much. I went to my derm this week, and she put in my chart that she noticed follicular erythema around my hairline.  She didn't say it outloud, but I looked up my info. online, and saw she wrote that.  So, of course I looked it up.  It says it is a "pre-curser" to FFA, and also a time when it is "active", and hair will begin to fall out.  I am so scared.  I guess I had thought that after 5 years, this thing had begun to stabilize, and I was blessed enough to still be able to easily hide it.  Something tells me that is not the case.  Any words of advice, wisdom, experience would be so appreciated.  It's also noteworthy to say that I have no hair on my legs - haven't for 5 years.  Hoping to hear back... Lori from Pittsburgh, PA

Comment by Lynn on January 22, 2015 at 2:22pm

Thanks Anne, I hadn't thought about it being an allergic reaction. I just assumed it was related to the FFA. I will definitely call my dermatologist. 

Thanks also for explaining how to post a comment to this group. I figured that out after I accidentally emailed the members. : )

I look forward to learning and sharing with this group. The support here is amazing. 

Comment by Classical Anne in NC mountains on January 22, 2015 at 1:51pm

Sorry, the "Add Comment" button is below right of the window you'll be writing in. 

Comment by Classical Anne in NC mountains on January 22, 2015 at 1:48pm

Lynn, I have just read your story in an open email to all of us.  We're sorry about your diagnosis, and especially concerned about your rash and itching.  It sounds as if you may be allergic to the Plaquenil.  It's not likely a reaction to the steroid injections, but that's a possibility as well.  You probably shouldn't wait long for an appt. with your dermatologist -- see if you can move it up, or go see your regular MD.  Allergies that cause rashes need to be treated! 

I am glad you found this group, and know that you will find comfort from the discussions here.  It's not always good news we're sharing, but at least we're sharing and not facing things alone.  This is a very compassionate group of ladies and we're happy to have you join the discussion.  For best results in terms of people responding, you need to post your thoughts and questions right here on this web page.  You should see a small blank window with a tool bar of typical word document buttons.  When you've finished writing [and the box will expand as far as you want to write!], then click on the "Add Comment" button below left.  Best of luck dealing with your rash and itching -- I hope you're able to resolve it soon.

Comment by Classical Anne in NC mountains on January 22, 2015 at 1:40pm

Hi Rapunzel -- what a great user name!  We welcome you to this very friendly forum.  Of course, we all wish you didn't have to deal with this issue.  But since you do, you're in the right place.  As for the eyebrow issue, it definitely seems to be a common denominator, but it is not 'proof' one way or the other.  Most of us have experienced some degree of brow loss,  but definitely not everyone.  It does require a scalp plug biopsy to confirm the diagnosis.  And as you may have discovered, there are many, many forms of alopecia -- some of which even can be reversed.  But FFA is what is called a scarring alopecia, meaning the hair follicles die and close up permanently.  The 'scar' is simply rather shiny bald hairline.  It is a good idea for you to at least see a dermatologist, and confirm the diagnosis, as there are treatments to slow the progression and treat the symptoms.  But there is no known cure at this time.  Best wishes to you, and welcome to a place where you can say and ask anything.

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