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Comment by Annie on January 9, 2014 at 11:23am

MJ, coloring my hair is also what caused me to go to the doctor about my hairloss.  I had my hair colored in February 2013 and noticed that my entire scalp was tender.  My hairdresser hadn't use anything new, and I assumed it would get better.  My scalp was still tender two weeks later, so I started looking for  my symptoms online.  I took me a while to find ffa, but I knew it was exactly what I had as soon as I saw the pictures of the early stages.  I've seen 3 doctors who all agree it's safe to color your hair, so I keep on coloring.  I figure my hair might as well look good as long as I have it!  I will say, however, that the hair color burned around areas affected with ffa for a few color sessions after my diagnosis.  I'm guessing it was affecting the open follicles where the hair had recently fallen out.  It no longer hurts when I color my hair, but I do experience pain when the wind blows extremely hard.   

Comment by Debs on January 9, 2014 at 2:03am

Pam we are not giving skin or blood samples it is just a general consent form that the department has to cover different research projects.

It does look rather alarming on the consent form but this project just needs saliva. Thank goodness. I have had more blood tests in the past year than in the rest of my life out together.

Comment by PamW San Diego, CA, USA on January 9, 2014 at 12:40am

MJ, my doctor prescribed the clobetasol in a foam, which does not leave my hair greasy. Also I apply the foam onto the itchy areas, dabbing it on to my scalp. I really don't put the foam onto my hair. My hair is very dry, never greasy.

Comment by MJ on January 8, 2014 at 9:04pm

Pam, i was also told by my first derm that coloring my hair is fine since the the issue is internal. It makes me wonder why they have me using clobetasol two weeks on and two weeks off when I have no external signs of irritation. Unless,mthe idea is that it gets deeply absorbed into the follicle. I am about to start two weeks on again. I have enjoyed this two week break...no greasy looking hair which made me self conscience and forced me to shampoo more often.

Comment by PamW San Diego, CA, USA on January 8, 2014 at 8:29pm

All the doctors say that hair color doesn't really affect the disease because the inflammation is at the very deep part of the follicle and not at the surface (scalp). Also, I don't believe Zyrtec will stop the hair loss. It stops the itching because it is an anti histamine. The hair loss is because our hair follicle scars over to protect itself from the attack. I use Zyrtec when my scalp is itchy and burning. If I am comfortable, I don't think about FFA (as much). I have really noticed an overall loss of volume in the last few months. I know I am shedding when I start to see my hair all over everything. Sometimes I will just run my fingers through my hair and I find hair falling.

I received my saliva kit yesterday and the packet mentioned taking blood and skin samples. Did Dr. Christos mention blood and skin samples to anyone?

Comment by MJ on January 8, 2014 at 5:05pm

Annie,
I was on Tamoxifen for breast cancer from age 47 to age 50. I had assumed all my hair changes were from estrogen deprivation. When I stopped taking it this April, I thought my hair would start to improve. Looking back, I probably started losing the frontal wispies about 2 years ago. As it turns out, based on recent bloodwork, I am now in menapause. The only redness I had was after having my hair colored in November. The first derm said it was from hair color. I haven't had my hair colored again and my gray roots are really bad. Want to wait to see what the new doc says on Friday. I really don't want to go gray as I have two young daughters and still blend in with their friend's younger moms...at least while I can still camouflage the hair loss! I will post an update after my appt on Friday.

Comment by Annie on January 8, 2014 at 2:25pm

MJ, I believe I had ffa for at least 2 years before I ever had a painful flareup.  I started out losing the wispy hairs around my hairline when I was about 48.  I just thought it was part of the aging process.  I never even noticed any extra shedding during that time.  It was only after I had a painful flareup & went to a doctor that I started to notice of the hairs in the shower and sink.  I've never had extreme shedding with ffa.  I usually notice between 20 & 30 hairs in the sink on the days I blow dry my hair.  The problem is that many of those hairs aren't growing back.  I'm still able to camouflage my hairloss with the help of a Rogaine & a good hairdresser, but the hair around my face is definitely getting thinner. 

Comment by MJ on January 8, 2014 at 11:27am

I am curious about Zyrtec as well. I am going to an appointment at the Cleveland Clinic on Friday and plan to ask about this also. Also, since I am in the category where I have no rash or itching, my hair just seems to be slowly thinning and disappearing. I was wondering how i can tell if I am "active" or not. Several mention about continuing to "shed." Is is actual hair in your hands that comes out? I am so grateful for all of you in this group. I feel so better informed than I ever could ever have imagined, and so much better prepared for my appointment this Friday.

Comment by Annie on January 8, 2014 at 11:01am

Hi all, just wondering how those taking Zyrtec are getting along.  Are you taking 3 times the daily recommended dose like the case study?  I switched my usual Claritin allergy meds for the recommended daily dose of Zyrtec each night about a month ago.  I've also been on Plaquenil for six months The redness and pain has lessened considerably.  I don't know if the Plaquenil is finally kicking in or the Zyrtec is helping.  I feel much better, but the shedding continues.  I'll discuss it with my doctor at my 3 month appointment on Friday.

Comment by Debs on January 5, 2014 at 3:43am

Brenda I have just sent you a personal message with a 'friends' request, if you don't see it then please see my post above 'FACTSHEET FOR FRONTAL FIBROSING ALOPECIA', please read it and you can get my email address. If you contact me I can send you that factsheet which contains wig website addresses so you can get yourself properly iinformed. You dont have to drive 4 hours to find a wig shop you can safely order online if you know what you are doing. The webiste addresses in the factsheet will give you everything you need. Wigs are a new product for most of us, myself included, so we do need to do our research and take advise from people that are experienced wig wearers. All this is in the factsheet. Happy New Year.

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