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Comment by spoilmygurl on March 14, 2019 at 10:10pm

@illustr8r I’ve heard a lot of people sing castor oil’s praises. I might have to start using it. I used to use Latisse in 2011 before I microbladed (it worked on my brows and lashes). You’ll never believe what happened. It caused the fat deposits around my eyes to atrophy. My eyes were sooo sunken in. I looked like a zombie. I had to get Restylane to fill up the hollows. The amount of Resty it would’ve taken to get me to normal was cost prohibitive. So In Nov 2016, I had a fat transfer to the face to get back to being me. You know Latisse was created when the big wigs realized a side effect of the glaucoma medicine that it derived from caused lash growth. If u go down that rabbit hole, you will find a lot of the glaucoma patients complained of fat loss around the eyes. But when you have to choose between sight and vanity, the choice is pretty clear so it’s mostly just considered a small price to pay. And it’s not a super common side-affect. But it happened to me. 

Comment by illustr8r on March 14, 2019 at 8:46pm

@spoilmygurl My hair seems to have phases and my stylist says that it’s true that hair growth has an ebb and flow. I use Castor Oil on my head 5 days a week and it’s improved my “good” hair and it helps my hair during those slow phases. I used to have a chin length bob but as FFA took over it became a shag cut and now I have a pixie. Not my first choice for hair style as I spent a lifetime hiding my big ears and now they are out for the world to see!

I saw on another thread that you are losing your eyelashes. Get a prescription for Latisse or other have suggested Rapid Lash. I had thinning lashes too and it helps the grow and stay normal. 

What I hate about FFA is the constant maintenance to just look-okay. Deeply frustrating! 

Comment by spoilmygurl on March 14, 2019 at 6:55pm

Hello all! Does FFA cause the hair you have remaining to grow slowly? I chopped all my hair off about a year ago before FFA had come into my life. Now I feel if I had my hair back, I could hide the hairline with bangs. My hair is very curly. I had my husband shave my head a few weeks ago and it’s barely a buzz length so far. That reminded me that I noticed my hair had been growing slowly last year before the FFA. The last time I got a haircut (when I had hair), I asked the beautician how long it has been since my last cut and she told me 14 weeks! It had taken over 3 months before I felt I needed to shape it up which meant it had been growing very slowly. If FFA causes slow hair growth too, I might never be able to grow it long enough to hide the baldness. 

Comment by illustr8r on March 11, 2019 at 8:20pm

I reread that report. Someone in the FB group posted it from Dr. Donovan's site and it was a little less "medical" to understand. It does seem that the JAK inhibitors sound more promising a treatment because researchers seem to think now that FFA aligns more with Alopecia Areta (sp) than it does with Lichenplanopilaris. A glimmer of hope I guess...more research please!

Comment by Kandy15 on March 11, 2019 at 1:03pm

Hi all,

I read the post on the Genome study around 2:00 a.m. this morning.  Yeah, This stupid FFA has robbed me of my ability to sleep much since I worry about it all of the time. 

It seems as if the JAK inhibitors may be a way forward for people with alopecia areata.  I think in this type of alopecia, the hair follicles are not dead like they are in FFA so they have a chance to be reactivated??  Not really sure about that but it would be truly wonderful if us FFA gals could find some hope if it could help us.  I would ask my dermatologist on my next appointment but I seem to know more than she does about this condition due to my research and all of you brave ladies who have shared such good information.        

Comment by Minter on March 11, 2019 at 9:09am

Yes, it does seem the non-UK participants didn't get notified for some reason...

As far as HRT I did skim through the report but it was not an easy read for me at all so I have no idea :-( but god I hope not, as I can't give my HRT up, no way- no how. 

I don't want to be dealing with FFA and be a sweaty, overheated, irritated mess as well!!

Comment by sammi on March 10, 2019 at 6:10pm

Are they blaming FFA on hrt?

Comment by Toby on March 10, 2019 at 5:33pm

Does anyone know the side effects of JAK inhibitors? Is anyone on JAK inhibitors currently?

Comment by Isabel on March 10, 2019 at 12:48pm

I'm also out of the UK and wasn't notified  via email, even though I went to the UK to participate in the study. It's possible they only sent the email to participants via the British NHS

Comment by PamW San Diego, CA, USA on March 10, 2019 at 9:26am

I took part as well and did not receive an email.  Debs, where did the report mention JAK inhibitors?

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