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Comment by BubbaLu on April 16, 2018 at 9:28pm

Half baked,

you do sound a little “off the hook” right now.  

I understand, I have been there.  It is a sad, mostly lonely journey.  It does help to have a lifeline that only the women with receding hairlines relate to. 

Just remember, my hairline does not define me. I am bigger than that.  There is always tattoos!   Or, hope for a cure.  

Comment by Halfbakedwho on April 16, 2018 at 9:17pm

So yeah, thank you all so much again. I don’t get much « itch » - it’s more just red and irritated. It is sort of slowing down now since I have been using Clobetasol 2x day, which isn’t what the Famous Dr. prescribed for me - the steroid he gave me is weaker (or seems so). But I take his tetracycline...

It seems that the past couple of weeks have cost me maybe a half centimeter of hair. I really notice it but I’m sure others don’t yet (unless you really look). I am wondering if I should go back to Dr. Less-famous, who prescribed a LOT of stuff (minoxidil, iron, blood tests)... the only reason being (a pretty big one) that this big flare-up has happened after getting rid of the Clobestasol and iron and minoxidil that she’d prescribed initially. Which doctor is right... and frankly the answer is probably both and neither... 

Dr. L-F wanted to do a biopsy, requiring me to stop the clobestasol for a month. I don’t WANT TO, it scares me to stop it. And why do a biopsy...??? 

OK All of this to say (as someone or all of you have already said) we are kind of doing DIY-throw-it-on-your-scalp-and-pray treatment gleaned from this or that Doctor or « doctor ». Minter, I miss going for acupuncture - I need to go back to that.

Maybe it’s a plot by the wig industry. Maybe we are evolving into the next form of humanity which won’t require hair (homo alopecieus) can you all tell it’s 3 in the morning here and I am up obsessing? Maybe just a little. 

It so much helps to not be alone. Bonne nuit. 

Comment by Anonymous on April 14, 2018 at 10:40am

I've been reading that extra selenium for people with autoimmune conditions is helpful. Anyone?

Comment by Afraid on April 14, 2018 at 1:46am

So sorry you are experiencing another flare of FFA.  Likewise I find the relentless pace of progression difficult to bear.  I haven’t tried injections (perhaps I should have done?) I’ve used clobestal for 6 months and into month 5 of hydroxychloroquine..... all to no avail. Reading posts on this site are supportive but equally scary.  There seems to be no way to capture the views of those with success stories online? Only threads detailing ways of coping with the loss.  I hang on hoping for a miracle.  Big hugs x 

Comment by Beez on April 13, 2018 at 11:10am

Yep, Plf is right....we all get lulled into thinking the FFA is cured or gone when we go into a remission type period. Even the doctors do; then all of a sudden it's back and we are obsessing in the mirror again. 

As for the little tiny hairs appearing....I have had soooo many people, hair stylists, family members say 'oh look, new hair growth' when I know it's actually dying hair. Those little baby hairs are actually old hairs that are doomed.

Halfbakedwho....I SO feel your pain. I just went through this. Increasing the ClobetSol helped the inflammation. Also, try a recipe recipe for Golden Milk or Turmeric Tea - it's a very powerful anti inflammatory drink that I use when my FFA is on the rampage or when I have very bad flares of arthritis.  Here is a link to the recipe I use. There are others that are more tea- like but I don't think they taste as good.

https://www.epicurious.com/recipes/food/views/golden-milk-turmeric-tea

Comment by Plf on April 13, 2018 at 9:45am

Hi halfbakedwho..just caught up with this conversation, it totally sucks, just when you think that you have come to terms with FFA, you go through a horror period...I am currently using a eczema cream called " hopes relief" it is available in pharmacies in Australia and on line, won't halt FFA but is great for the itch..I know this doesn't help..and I can relate to the fact you think all is going well until you wake up in the morning and their is a flare up.  Sorry no solution.., bloody FFA!

Comment by Halfbakedwho on April 13, 2018 at 9:23am

thank you guys. I too tend to tell people - not everyone - but I don't feel the need to hide. I wanted to call my doctor but the afternoon is running by me - 

I too have a hair topper (well actually a wig that I want to cut up). I am just freaked out at how it seems to be going really fast at times, slower at others. Why why why? No one knows. If it were men getting this, there would be so much more available, most likely, alas. 

Comment by Minter on April 13, 2018 at 9:20am

@Halfbakedwho, I'm sorry you are going through a bad flareup- antihistamines sometimes help and when mine was bad I tried acupuncture and chinese herbs which also seemed to calm my skin and me. If I could afford it I would go every week! I pretty much stopped using clobetasol except for very rare occasions as it thins out the skin and I noticed it happening along my forehead. I now use castor oil and tea tree oil and if I am really itchy take an antihistamine which seems to help- 

@BubbaLu, I tell people also- I mean I don't run around announcing it ;-)  but if it needs or seems to be the time or place say it, I will say I have FFA and explain what it is. It is not our fault we have this stupid disease!  and it does make me feel better and not so embarrassed about it :-(

Comment by BubbaLu on April 12, 2018 at 11:51pm

I still look fairly “normal” except when I see bright sun shine on my hairline, I can see Red tiny bumps and thin hair.  I am obsessed with looking at it because I was just diagnosed two weeks ago.  

I had to cut bangs - it keeps me from constantly looking.   

Last week I was sitting on a “board” as I am treasurer of a ladies golf group this year.  After the meeting someone told me the sun was shining through my hsir and it “looked so pretty@.   I told her, “ don’t get used to it”.  

I am starting to tell people about this ailment.   That makes it real, in a strange way, it helps me accept what is coming.  

Comment by Lynn555 on April 12, 2018 at 11:30pm

One thing that has helped me from freaking out is I bought a hair topper. And I also bought bangs with sides attached to a headband. Plus,I have a full wig on order. It might sound like overkill but I like to be prepared!! :)

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