Just diagnosed with FFA

I have been losing hair for about a year I’m guessing. This last spring is when I noticed my sides at the temples were receded far back than I had ever noticed, can’t put the sunglasses on my head without making sure to pull some hair over back toward front. Went to dermatologist yesterday & she diagnosed me with FFA. I told her I had been using Rogaine for women since August & she said that was great. I was using the 2% minioxidil but she said 5% is better, 2% doesn’t do anything. She gave me a prescription for clobetasol to use twice a day first two weeks then once a day. Then to go back to see her & then she said she would try injections or a pill. I’m really scared as to how much hair I’m going to lose before it stops. Any input would be helpful.

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Replies to This Discussion

Permalink Reply by Donna on October 8, 2017 at 3:12pm
Thanks for your reply Diane. My dermatologist was young & I was happy that she right off knew what this was. I got my clobestatol at Walmart through my insurance for $15.00 insurance co-pay. The cash price with no insurance was $110.88
Permalink Reply by Minter on October 8, 2017 at 7:29pm

Hi Donna, I'm really sorry you have to be here on this forum with us- this is an awful disease.  But, I am forever grateful for this group of ladies who all offer incredible support, advice and laughs too!  Post away with any questions or post to complain and vent, whatever you want- we will be here for you. 

Permalink Reply by Nina Jones on October 18, 2017 at 6:00pm

Hi All - As difficult as it might seem, I really do think acceptance is the key. I read about all these different things each of us are trying, so many, that I get lost in the detail, and totally confused. It just seems so mad, doesn't it, that we have the knowledge to send people into space, build skyscrapers, make perfect babies in test tubes etc etc and yet not one medicine man or woman can come up with one product that can effectively treat this bloody stupid condition. So of course, we're going to end up using anything and everything. And does any of it work - well, sometimes, yes (for a while), but from what I am reading on this site, usually the FFA comes out winning, and it's back to the drawing board for us.    

What I hate is the obsessive phase I go through every now and then - the checking, the faffing around with my hair, the constant 'reassurances' I ask for from friends and family, like 'can you see the bald bits', 'would you have guessed if I hadn't shown you', and god help anyone if the give me the wrong bloody answer!!!

The phase I love is the acceptance phase. The one when I look at myself and say, 'well, actually, Nina, you're looking good, girl. And so is your hair'. When I shrug the whole thing off, and say, 'so what?' When the makeup goes on great, the jeans fit beautifully, my busy life is full on and the sun is shining, and my mind is a million miles away from stressing about just not having a bit of hair over and behind my ears and my hairline has just gone back a bit. Instead, I look after the rest, make sure it's shiny, and bouncy, and I am too.

At the moment, I'm in the 'slightly' obsessive phase. Just noticed a spot where a little bit of hair has suddenly gone missing - where the flipping hell is it??? I'm sure it was there the other day...so I'm checking and worrying, and looking up on this site for miracle cures. The bad news is, I don't think there are any - yet!!! And, yes, that little spot may grow bigger, and bigger, and after 8 years of having this wretched condition, I might have to finally succumb to thinking I may have to go searching for a wig, or whatever else there is out there (why can't they - whoever they are- come up with one decent product that will suit all, be affordable to all, and be comfortable, and attractive, and make us girls feel a million dollars/pounds, euros again - but, again, no one has come up with anything. Like the 'cure/treatment', there's nothing that we can all recommend to each other as being something that definitely works.

The good news is I know that I will come out of my obsessive phase. And will be back on form again, and will just accept that I have got what I've got and I've just got to get on with it. And I expect you will all too - in your own time.

Lots of love

Nina xxx

                    

              

Permalink Reply by illustr8r on October 18, 2017 at 8:45pm
I hear ya Nina. I’m right there with you. Although I think the AIP diet is helping (and I feel better because of it beyond the hair) I find some weeks I drift into analyzing every hair shaft in my close up mirror and fretting about my situation-especially if I’ve been in a crowd and I see women my age with bouncy hair and intact eyebrows. I’m definitely managing the mental side of this stupid disease better than when I was first diagnosed- especially in knowing I’ve had it long before any doctor finally took me seriously about my hair loss.

All I want for Christmas is for it to burn out! Apparently that is our great mystery...we know it does they say...but when is when?!?

((Hugs))
Permalink Reply by Donna on October 18, 2017 at 10:56pm
I feel the same way. I wish they could find a cure or close to it. almost 2 weeks since diagnosis. I can still hide it a bit except when wind blows. Also I almost feel bald when the wind blows, so cold. But I have to say I’m very thankful I wasn’t diagnosed with cancer instead. I will just have to deal with this best I can. I haven’t receded too much yet. The worst is at the temples. I don’t know what the dermatologist next step will be with me. I have an appt. on Nov. 28

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