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Comment by illustr8r on February 3, 2018 at 2:25pm

I used RetinA for quite a few years to battle brown spots on my chin, cheeks and neck. It did fade them but it can thin your skin and makes you sunburn easy-which is why I always used sunscreen in my make ups-which some suspect is a trigger for FFA. Great! It’s maddening I tell ya!

Funny, I have tried all sorts of all natural and organic face lotions and soaps since the diagnosis of FFA and they all gave me the skin of a 15 year old-volcanic red raging pimples of ugliness. I chucked them all and now I use Ponds. I know it rates high on the EWG scale but I’ve had no luck with the “good” stuff.

I love my castor oil though. It’s giving me sprouts of new hair growth and eases the tightness on my scalp. @Minter have you seen any new growth since you started using it? 

Comment by Minter on February 3, 2018 at 8:12am

I use almond oil on my face and castor oil on my arms and along my hairline- sometimes mixing the two and I have just run out of my lavender oil but will get some more and start adding a few drops to the almond oil.  I have tried retin A in the past in a moisturizer and my neck turned bright red and itchy- I guess it was hives but that was the end of me ever trying retin A's! I am trying to use as much "all natural" stuff on my face, but I am so sick of trying to contour/blush/brush/conceal my white shiny forehead that I am tempted to use a bit of fake tan on my forehead just to even everything up, how much worse could it possible make my skin at this point! Though, I am going for a facial in a couple of weeks so maybe that will help even everything out somewhat :-/

I have also considered a perm every now and again, I haven't gotten one from the 90's! But I wonder sometimes too if it will help thicken up and cover up my thinning top along with a good color :-)  I have a long layered bob that is just above my neck and I am thinking that the long layers have to go, I need to get more layers (or do the perm)! to get a bit more body to my hair- also thinking of having "fake" sidepieces cut into my hair, I am always pulling a bit of hair forward to cover my empty space in front of my ears, but if I have "sideburns" cut, it might help- wow, again like the 90's ! Jeez, perms, fake tan, sideburns, I am going back in time, might as well get a mullet while I am at it haha!

Halfbakedwho, I know you had a crummy week, but I love your words, it is so hard to be self-accepting with this crappy FFA and it is so true, I would never, ever say to other people what I say to myself about my appearance- I should start being my own friend again who likes me for me and not just for my hair- I hope you have a much better weekend!

Comment by Jess on February 3, 2018 at 6:31am

Pauliegirl, thank you for posting the article. I am on the fence, but I think I'm gonna take the leap and ask my dermatologist if he'd be willing to give Isotretinoin a go. I'm hopeful that it will at least clear up my skin, and then maybe I can try Retin-a where it has thinned and gotten a little crepe-y around my temples. I saw another study that showed positive results with Isotretinoin and rosacea, which I also have. Maybe I can kill two birds with one stone.

Comment by Plf on February 3, 2018 at 2:11am

Hi, as mentioned earlier I'm still in the " just diagnosed" group so still looking for the miracle cure, I know there is still some question that FFA could be a auto immune disorder.  Has anyone tried intermittent fasting as a method of halting the progress of ffa?  I visited my Gp yesterday and said that o felt that my dermatologist has just prescribed medication s without explaining their side effects, as the drugs she prescribed have 57 percentage success rate in a small group of women I really wondered if side effects were worth it.  Apparently I am eligible for a pharmacist to visit in home and give me all the details of drugs involved....whilst the descion to commence treatment or just embrace the disorder will still be hard at least it will be a bit more informed!  Meanwhile nil drugs till I have celebrated my daughter's wedding in 10 weeks time... ironically today caught up with a good friend today who commented on how lovelyy hair looked....of course I could not say a word re condition...I applaud all you brave lovely ladies please keep up the conversation

Comment by Plf on February 2, 2018 at 7:18pm

Thanks for all the posts this week, it's so nice to have a forum just to talk and say how you feel..I am thinking about counseling as I don't want to talk to my family and friends about it anymore.  Halfbakedwho, sounds like you have had a really horrible week, hope your weekend improves, keep up the relentless struggle not alot else we can do...again thank goodness for this site...I have been using castor oil on my eyebrows everyday for last two months, makes me feel better and hoping they won't fall out

Comment by Halfbakedwho on February 2, 2018 at 4:35pm

A lot of posts this week. I have been so busy. 

OK - in terms of perms - I was at a doctor's office today, and heard once again how lucky I am that my freaky hair covers the bald spots. Because they are growing, and if I lift up the the curly mass that covers them, it's kind of a minor shock to people who wouldn't otherwise notice. So yes to that. 

Afraid - I want especially to respond to you. Some days I too can feel like if my appearance is going downhill, so is everything else - it really *is* that important, especially for us as women... 

But - I also think the most important thing we can do for ourselves is complete self-acceptance. We didn't do anything wrong, we don't deserve to lose our hair, and we especially don't deserve our own meanness and judgement around our appearance. 

I am soooo imperfect at this - I am distractible, kind of messy, prone to melancholy and overly sensitive. I may, on top of that, lose a bunch more hair and gain a lot more wrinkles. I get very scared of that too. Who will love me if I'm a half-bald wrinkled messy distracted middle-aged woman? I know my cats don't care as long as I feed them. No - I'm kidding. I get scared of how much appearance matters, and how mine - especially around my hair loss, is pretty much out of my control. It really sucks. 

BUT- that's why, if the whole world falls apart (I lose my hair, I can't work anymore, or worse...) I need to stay on my own side. Some days I think it's just so hard to keep fighting - I just don't want to anymore. But then I remember - it shouldn't be a fight anyway - there's nothing to "prove", this is really hard, and all there is to do is take as good care of myself as I can. Again I do that very imperfectly. 

Hope this made some sort of sense, b/c very, very tired. What a @#%$!! week it's been. 

Comment by pauliegirl on February 2, 2018 at 1:13pm

Jess, I had found an article re facial papules in FFA and isotretoin (“accutane”) use shortly before the publishing of the one from Poland using isotretoin and good success halting FFA that you shared with us last October. I will attach snapshots of the article. Tho the number of researched was only 3 patients in the papule study, they all had great success with the isotretoin. 

Jess, I recall that you said you were reluctant to start isotretoin and I respect every single person’s choice on how to proceed and treat or not treat this poop disease, but I just wanted you and everyone interested to see the study. 

At some point I need to make a separate post but I started the isotretoin almost immediately after that study came out of Poland.  I take a plethora of other meds for the disease and put various things on inflamed areas so unfortunately I can’t say what might be working for sure:( but I have recently seen a good decrease in inflammation and will keep you all posted. 

Comment by Rachel Germany on February 2, 2018 at 11:47am

Next question: does anyone who is still menstruating have a flare up during menstruation?  I do and it is like clockwork.  The rest of the month is mostly ok, it's just when I'm menstruating. Does this sound familiar to anyone?

Comment by Rachel Germany on February 2, 2018 at 11:42am

Now this may seem a little random but has anyone thought of getting a perm??  I have read from a few ffa sisters that they think they can cover the loss better and longer with their curly hair.  I was an 80's poodle and actually loved my locks.  Obviously this would be harsh on the hair and scalp but so is colouring and many seem to be still covering the grey.  It's just a thought...would anybody like to expand on it? 

Comment by Rachel Germany on February 2, 2018 at 11:35am

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