Replies to This Discussion

Permalink Reply by Sas Holland on January 13, 2015 at 1:20pm

HI Ann,

I discoverd my FFA  last august and it looks like it is in remission now. my eyebrows dissapeared 10 years ago, I just had them tattooed and did not think of a disease at that time.

Since a year and a half i use the Curly Girls (CG or CO) method for my hair (I have curly hair, but my husband not at all and he uses my products and is very happy with it, much less greasy hair he claims)

This means washing your hair only with conditioner or so called no-poo . So t's basicly not using harsh sulfates (in shampoos),  sillicones (in conditioner and styling products) an no parabenes in any hair products.

I use Decacurl or Devacare (for coloured hair) and jessicurl products and Kinky-curly curling custard as a gel.

My hair is much more shinier and healthier ever since I don't wash with sulfates anymore.

I do still colour my hair, which I probably should stop, but I don't want to.

good luck!

Permalink Reply by sallylwess on January 13, 2015 at 1:58pm

Hi Ann, 

Welcome to a club that none of us wanted to join.  Like Sas, I also use the Deva products.  I have used them for about four and a half years after I read about them in a Curly Girl book.  I did not know it then, but I already had FFA.  I knew something was wrong, and I blamed the shampoo and hair products I was using (Aveda), but I did not know for sure what was going on.  After switching to Deva, the sores on my scalp did go away, but it would be two more years, and two more dermatologists, before I knew why my hair was falling out and why my eyebrows suddenly disappeared literally overnight.  I use clobetasol on my scalp.  I also have had steroid injections.  My scalp is somewhat quiet at the moment, and the hair loss has slowed down, but I had a major flare-up this fall.  While, I have continued to have problems with hair loss, I continue to also use Deva products because I believe they are the safest thing for my hair and the hair I have left is healthy.  

I do alternate between wearing a wig, a topper, and headbands.  None of these really work for me as well as I wish they did, but I at least feel more confident in public wearing these things to cover up my receding hairline.  It marches back more than I ever thought it would.  I now have a seven finger forehead - seven fingers back from where my eyebrows once were.  I hope the early treatment and intervention works for you.  

Permalink Reply by Ann Wilson on January 14, 2015 at 6:14am

Thanks Sas and Sallylwess for your responses. I don't know whether or not your recommendation will work for me. I have straight hair and I no longer color it. I had colored for over 25 years but finally stopped it when the greys no longer colored and I grew accustomed to how my hair looked naturally.

Any other suggestions as to hair products?

Permalink Reply by Alice on January 14, 2015 at 6:13pm

Ann, if you are having problems with itchy, tender scalp, you might want to try a tea tree oil shampoo.  I've been using an organic, sulfate free one from Nature's Gate and it does seem to help. Rogaine thickened my hair up a lot, which makes it easier to cover the areas of hair loss. My hairdresser was so impressed, she started using it, too.

Permalink Reply by sharon on January 15, 2015 at 4:00am

Hi Alice.  My name is Sharon and I also so FFA.  Think I've had it for about two years.  Actually, I went to the dermatologist for an annual exam and she discovered it.   Anyway, I bought Rogaine but haven't used it yet.  Did you use it twice a day?  Also, do you put it only on the front where the FFA is active?  I'm also taking Avodart 0.5 mg. and Fluocinonide topical solution.  I use the solution only occasionally, since I've been doing it sometime.

Thanks for the info on shampoo.  I do have my hair weaved.  The hairdresser is very careful not to get any of the product on my scalp. 

Permalink Reply by Alice on January 15, 2015 at 4:21pm

Hi, Sharon. I've had FFA about 3 years and am still able to "work a combover". The Rogaine has helped a lot. Because I am one of those with tender, red, itchy, sore scalp, my derm suggested starting out with the 2% solution, twice a day to make sure I could tolerate it. After the 3 month supply was used up, I swtiched to using 5% once a day, at night. I find the liquid easier than the foam because I can get I right down to my scalp. I lean my head all the way back and run the tip of the dropper over as much of my head as I can while squeezing very gently on the bulb. I can usually get the front, top and sides of my head covered before the dropper is empty.  Then I quickly lean over and rub it into my scalp with my fingertips. It took a coiple of monyhs before I grew any hair, and could actually feel it before I could see it. The new hair is grayer and curlier than the rest, but I'll take what I can get.

I also take Plaquenil, turmeric and ginger twice a day and use betamethasone diproprionate topically about every other day. I tried clobetasol but it was too irritating.  A tiny amount of Elidel cream has kept my eyebrows from vanishing and I've started using it right along the front hairline, where the scalp is most inflamed. 

Hope this helps. Good luck to you. 

Permalink Reply by sharon on January 17, 2015 at 12:20pm

Thanks Alice.  I will purchase some Rogaine and give it a try.  After using medications for over a year, I get a little tired of it and think "Oh well, I'll just live with it."  This sounds easy enough and hopefully after using it in the evening, you can still style your hair  in the morning.

I'm thankful to have found this support group!

Permalink Reply by Elaine on January 19, 2015 at 10:35am

I just started using Phytolium shampoo and hair thinning treatment this past week. Phyto claims that it helps women with androgenic alopecia. It's plant-based, and I like the way it smells.. If it doesn't help my FFA, then it's only hurt my bank account.

Permalink Reply by juliec on January 20, 2015 at 9:09pm

I am newly diagnosed as well and am just trying to learn what all I can do to keep the hair I do have.  My eyebrows are virtually gone and my hairline has creeped much more than I feel comfortable with.  All information I can get is helpful.  Thanks.  I am using clobetasol and minocycline 2x a day. I am finding the clobetasol is thinning my skin and veins on my forehead are starting to stand out. I think they are helping but I do still have a tender scalp, so I'll try the devo to see if it helps. 

Permalink Reply by sharon on January 21, 2015 at 12:05am

Hi Juliec.  There are so many products out there and it's hard to know just what to do.  I'm not sure when I actually got FFA but have been treating it over a year.  I take Avodart and use the corticosteroid topical liquid sparingly.  At first I used it a week on and a week off.  Just had carpel tunnel surgery but when I'm able will start using the Rogaine and try the shampoo.  I too have very few eyebrows and not one hair on arms and legs.   I do believe the steroid helps but the stuff kind of scares me.  One dermatologist I saw said absolutely "No."  I've seen three and they all differ.  Hang in there!    I hear the stuff eventually burns out.