Replies to This Discussion

Permalink Reply by PamW San Diego, CA, USA on August 11, 2013 at 7:58pm

My suggestion is to contact CARF and they have a list of dermatologists that are experienced and knowledgeable about FFA. Their website has a lot of information. Good luck to you!

Permalink Reply by PJ - MN, USA on August 12, 2013 at 4:55pm

Hi Katy! Myself and another member on here from MN both see Dr Hordinsky, Dermatology Dept at the U of MN. She is the go to person in our area. I started seeing her in August 2012 and finally got the correct diagnosis and treatment started. You have to apply to get seen by her, which means sending a pleading letter and your medical records. She will review your medical records and let you know if she will accept you as a new patient. She sees quite a few FFA women and very open to new methods/treatment. She likes to start out with a conservative approach. They do offer the laser treatment, but very expensive. Also the UofMN is working on getting a study together with other universities around the country on FFA. I haven't heard anything in awhile on this. So far I have had no luck with my eyebrow hair growing back. But we are always trying new things. My treatment started very simple. Using Head&Shoulders original shampoo, alternating with DHS Zinc shampoo, Free and Clear Conditioner and Hairspray and getting steroid injections. I did see regrowth around my hairline. Now I've added to this Elidel cream on my eyebrows and retin-A on my face. Clobetasol foam or shampoo with flare-ups. Definately get a biopsy done to confirm your diagnosis. Good Luck to you and hope this helps you get a start on it.

Permalink Reply by Katy M. on August 12, 2013 at 5:20pm

Hi PJ! Thank you! I found Dr. Hordinsky through a friend of mine that used to work in the dermatology department at the U. Yes- just starting to find out the referral process can take 6-12 months. Good thing I'm on it now. I'm not even sure I have FFA- that was the guess of the doctor that did my eyebrows last Thursday. My brows went away several years ago and I've just noticed my hair really starting to thin out lately. At first the derms just guessed that I had alopecia areata since my brows were the only thing to go. Then after I had my daughter, I started shedding, but that happens after you have a kid, but then I just kept shedding, and shedding...and it always seems there's a lot of hair in the sink and tub and floor after I style. I still wasn't really freaked out until the doctor said my loss looks like FFA. Again- it seems pretty atypical. How long between losing brows and the hairline do most people notice? I haven't ever noticed any inflammation or "flare ups", though, or scar tissue- so not sure until I get a biopsy what is going on.

Thank you so much for the information about Dr. Hordinsky. Once I get back on track with my derm regarding the progression of this alopecia- I'll do all I can to see her.

Permalink Reply by PamW San Diego, CA, USA on August 12, 2013 at 5:59pm

Katy, any derm can do a biopsy. You may want to see a specialist for treatment.

Permalink Reply by Mary on August 14, 2013 at 10:29pm

Hello, I was just diagnosed with FFA today and am feeling very depressed & self-conscious about my hair loss already. I can't imagine feeling good about myself as this progresses. I see some young women with baldness who look great, but I am in my 60s and would look terrible. The dermatologist told me that there was no cure or definitive treatment. He put me on tetracycline antibiotic and a cream for my eyebrows. He scheduled a follow-up appointment in October. My eyebrows are very thin (over 1/2 gone) and my hairline is getting very thin around my temples and above my forehead. My doctor didn't offer much hope, so I would like to know what can be done by a specialist. What is the laser treatment? You mention MN--I am followed at Mayo in Rochester for cardiac problems. Do you know if anyone at Mayo can help with FFA? I am just an emotional mess right now. Thanks.

Permalink Reply by Kath UK on August 15, 2013 at 1:51pm

Hi Mary and welcome. I really feel for you - it's so depressing to get a diagnosis of FFA (as I know) and it's only natural to feel emotional.
I think you'll find this group a great support - I certainly do - they are such lovely ladies from all over the world.
My advice at the moment, for what it's worth, would be the same as Celia's; ask to be referred to a specialist, see what treatments you're offered and take care of your health generally.
And be kind to yourself!

Permalink Reply by PJ - MN, USA on August 19, 2013 at 4:12pm

Mary - I started out with Mayo trying to figure out my whole hairloss issue. I did not find anyone there that seemed to know anything. Then I found out about Dr Hordinsky at the U of MN. She is the specialist to see in MN and sees quite a few women with FFA. The laser treatment is an Excimer laser that is being used now for hairloss. I do not know a whole lot about it, but it's very expensive and not offered many places. Dr Hordinsky uses it. By seeing a specialist you can get the steroid injections, which I thought helped in the beginning stages. Yes, there seems to be little that can be done, but being associated with a specialist will help in any future studies and keeping abreast on any new information/treatments. In the beginning I was going every few weeks, now every 3 months to touch base and see any changes. I do have some hair regrowth around my hairline, so there is some hope on that if you get treatment before the follicles scar over. You can not let FFA get to you. Maybe I live in denial. I don't study myself everyday in the mirror to look for changes or check how much hair I've lost each day. That will drive you crazy! You have to continue living life. Maybe when it comes time for wigs I will feel differently. I talk about it with whoever asks. It's pretty obvious I have something going on with no eyebrows or hair on my legs/arms. It does help to have a supportive spouse/family (pets too) that you know will be there whether your fat, skinny, bald, ugly, senile, disabled, sick, whatever. You can't worry about the rest of the world and what they think. Ok, enough of that. Hope you can find a way to carry on in life and forget about FFA for awhile. Don't be so hard on yourself!!

Permalink Reply by tiffanyaa on October 18, 2013 at 5:22pm

Hi!  I am new to this world and I just read your comment.  I feel like I am going crazy counting the hairs on my head.  I am wondering what treatment you were using that caused hair regrowth.  I'm pretty sure all the hair I've lost is gone for good, but I will try anything.  I am only 30 years old and this is so hard.  All my dermatologist has me doing is taking 400mg of hydroxychloroquine a day.  And a steroid cream if I see it acting up.  I just want to know if there is more I should be doing...or if I should try to find a specialist in my area.  Any ideas or help would be greatly appreciated!

 

Thanks,

Tiffany

Permalink Reply by PamW San Diego, CA, USA on October 18, 2013 at 8:38pm

Tiffany, your treatment is the treatment that most of us are on. It takes several months for the Plaquenil to work. I didn't feel like it was working for me until about 9 to 12 months. I also obsessed over every hair lost. It is normal, but trust me you will have ruined your day and all the other days worrying about something that you can't control. I wish that I could have all the days back that I wasted worrying and crying over hair. I strongly suggest to you and everyone else who is out there to seek counseling if you feel the FFA is taking over your thoughts. I did and it has helped tremendously. I have also found my scalp to be calmer when I am calmer. Most people stabilize and lose hair very slowly once they begin treatment. Try not to worry.

Permalink Reply by Annie on August 13, 2013 at 10:47am

Katy, CARF will also advise your current doctor how to treat you. This is especially helpful if there's a long wait to get in to see a specialist or if the specialist is out of your insurance network. It's good to start treatment as soon as possible for the best results.

Permalink Reply by ElleMN, USA on August 25, 2013 at 12:05am

Hi Katy. I see that you already found Dr Hordinsky; I'm the other patient of Dr Hordinsky's on this Forum that PJ mentioned. I'm 46 and noticed my eyebrows thinning about 4 years ago; but I think this was going on well before that. I had my daughter two weeks before my 40th birthday and think that might have something to do with it. I hope you can find some answers; but I also hope you don't have FFA. Maybe the three of us Minnesotans can get together and share stories and laughs like the UK ladies! Good luck to you!

Permalink Reply by LTown on September 24, 2013 at 9:43pm

Katy, Just wondering how you are doing? Did you find out if you have FFA? How are your eyebrows doing? Please keep us updated. Take care

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