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Comment by Jules Australia on May 1, 2018 at 7:30pm

Curly K, I would like to ask same questions as Illustr8r & Minter, I have never taken any of medications suggested/offered by Derms (other than some topical corticosteroid cream for scalp within first yearof symptons back in 2013 - absolutely usless! The derm gave me a script for 6 tubes PLUS 6 repeats & sent on my merry NOT way) and when I asked "shouldn't I make another appointment", he said "Not unless you have to, your hair looks alright"; almost as useless advice as the medication itself. I believe they just say try this or that & if it slows or improves they say meds are working, if it doesn't they suggest something else, & say it works for some of their patients, not everyone; how could they know for sure  its the meds or just the natural course of wax/wane. Anyway, like Minter & Liz plus others my Mum also has ffa, but no-one else in family,I have 3 sisters that have no sign, my Dad still had full head of hair at 77 when he passed away.I am 60 Oct, my Mum is 89, but she had no signs of ffa 'til about 6/7 years ago (interestingly around similar time to when mine started). So myself around 53/54 and Mum was ab. 82/83 when signs first appeared. Mum has the loss but not the pain itchiness/tender discomfort that I have experienced. And last, but not least thankyou, thanku, thankuu! to halfbakedwho for making me laugh & giving me those wonderful, invaluable doses of dopamine in your comments, keep it up, your wonderful sense of humour helps to keep me going, including support from everyone here, so much appreciated.T H A N K S   Jules                

Comment by Plf on May 1, 2018 at 7:24pm

Your hilarious halfbakedwho, humour is always good..bathing in the tea..

No just three cups a day, apparently it takes a month before you see results..good luck Lynetter hope you r one of the lucky ones whom has managed to banish the disease...

Comment by Beez on May 1, 2018 at 3:57pm

Halfbaked... you always make me laugh and laugh. Thanks I need that!

Comment by lynetter on May 1, 2018 at 3:07pm

 Hello all. I have had diagnosed FFA for 4 or 5 years and symptoms going back farther than that. I had hair loss in the back hair line and the front with almost an inch hair loss in both directions. I have zero eyebrows (now microbladed) and very little to no body hair. I have never opted to use medicine in this disease except for one round of steroid injections around my entire hair line(front and back) that left huge holes in my forehead-which I hated. I have all kinds of reactions to medicines and have tried to stay off of any except for my thyroid medication. About a year or two ago I noticed that the irritated red bumpy rash in the back was gone and it stayed gone. I have not had an issue since. (Burn Out?). Now I have had a clearing up in the front as well for about 7 or 8 months. Though I do not have hair growth where I had hair loss, my entire hair consistency is back to normal and seems fuller. I have not had any worsening hair loss since.  I have no idea if this is burn out or not but I just wanted to share. The only thing I have done differently since having this disease is to stop salon coloring treatments and all sunscreen near my face or hairline. 

Comment by Halfbakedwho on May 1, 2018 at 1:22pm

Yes, I third the question illust8r asked! And Plf, you are infusing yourself with spearmint tea? 

I would love all the info on camouflage (though that sounds kind of funny to me, though that could just be me. To hide in the woods I wear green and khaki clothes to blend into the surroundings. To hide my bare scalp, should I only hang out with bald people? Or stand really close to people with a lot of hair? Conundrum.)

I would also be interested to know if there's a common pattern to the hair loss. For example, I am only losing (knock wood) hair on my head so far, in the front, at about a half-centimeter every couple of months or so. (not that I measure, yuck). Other people have talked about losing eyebrows first, or arm hair first. 

I have no other health or auto-immune issues. No rosacea, no bad allergies, no thyroid problems... is it more or less common to have "nothing but" FFA, or is it more frequently associated with other illnesses? 

Minter's burnout question is very good too. I think "they" (doctors, researchers, etc.) have NO idea - I think they talk about "burnout" so we don't totally "freak" out. Infantilizing. I would prefer the brutal truth - that they just freaking don't KNOW. I can take it. Especially if I can please keep my eyebrows. But they don't know that either I suppose. 

The hair loss at the top of my head makes my hair look strangely flat there, with a lot of thickness on the sides and back. If I stand under a man with a beard, does that count as camouflage?

Sorry... 

Comment by Minter on May 1, 2018 at 8:10am

@CurlyK, I'd like to know the same as illustr8r's great question please, along with the burnout or progression rates compared to people who do not use anything for treatment to people who do-

& one more question, what is the rate or occurrence of family members with FFA, mothers/fathers-daughters/sons-sisters/brothers.  My mother has it, her parents did not and none of my siblings have it. 

Thanks for sort of taking us along with you in this way to CARF!

@ BubbaLu, I had Juvaderm only once 10 years ago and that was years before FFA made it's appearance :-(

Comment by illustr8r on May 1, 2018 at 2:16am

@CurlyK I’d like to know how many have stopped treatment because they feel it’s futile-and if there is any proof at all that the drugs that are prescribed do any good. Maybe not a question but an observation of what you hear from the people you meet there.

Comment by illustr8r on May 1, 2018 at 2:13am

I’m heading to bed with one red ear. This stupid stuff. I’ll never understand why it flares the way it does!

New experiment: I’m taking 600mg of N-acetylcysteine (NAC) 3 times a week. It’s a powerful antioxidant and offers protection to kidneys and the liver (counteracts the use of Clobetasol, maybe). It has anti inflammatory properties too. So, I see both my nephrologist (who said I could take it) and dermatologist in 6 months. We’ll see if it helps or not.

Comment by BubbaLu on April 30, 2018 at 11:32pm

I have had Botox for years and never had a problem.  Only when I had Juvaderm did I have an issue.   

They are not the same.   

Comment by Anonymous on April 30, 2018 at 10:43pm

Juvaderm is different from Botox, right?

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