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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.

Comment by RAPUNZEL on January 22, 2015 at 1:13pm

Other than "official" diagnosis how do we know if we have FFA?  Are eyebrows always lost with this condition?  I have loss above my ears that is creeping upwards.  My bang area is affected also.  The back of my hair used to be affected but it has thickened up since being on Rogaine.  I haven't been diagnosed with anything officially but have assumed it's Androgenetic Alopecia as I haven't lost eyebrows at all.  Would like to hear anyones thoughts on this.

Comment by Jen on January 13, 2015 at 9:14pm

Thank you MJ.

I always have great intentions where my diet is concerned.

Comment by Maddy, California, U.S. on January 13, 2015 at 7:22pm

My existing hair has DEFINITELY thickened up using Rogaine...which helps to cover up the thinning areas in the front and sides. My hair stylist (of 20+ years), noticed it immediately when it started thickening up. I do have to say though that it took somewhere between 2-3 months of once a day use for me to really start noticing the difference. I had resigned myself to wearing a custom hair piece that I had made and have yet to wear it because my hair thickened up enough to cover the areas....at least for now (glad I have the hairpiece though as a back-up).

Comment by Annie on January 13, 2015 at 5:20pm

Sad in Chicago, You're correct that we can't grow hair where it has already scarred over, but I have thickened up the surrounding hair considerably.  My plan is to hang on to as much hair as possible until someone figures out a way to stop our bodies from attacking our hair follicles.  I also believe that using a topical on my hairline as well as taking oral Plaquenil is helping slow the progress of my ffa.  It has definitely lessened pain in the areas that are affected by the ffa.  It was too painful to push my sunglasses up on my head a year ago, and now I do it without even thinking. 

Comment by MJ on January 13, 2015 at 5:11pm

I use the foam nightly and I find it is pretty easy to use. I hated the liquid as it was a drippy mess. Jen, now that I am working full time I am less restrictive, but I restrict gluten (wheat), dairy, processed foods, and refined sugar. Drink green smoothies with fruit, greens, flax and/or chia. Only drink water green tea and occasional red wine. Take biotin forte with zinc, turmeric supplements, slow release iron, and plaquinil. Try to eat lots of salmon and limit animal protein too. Having said all that, I am going to pick up a pizza for dinner. Lol! Had a healthy meal planned but my 12 yr old was in need of math help before dance class...so I am foregoing the time to cook.

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