Replies to This Discussion

Permalink Reply by Bloomingdalekid on August 6, 2018 at 11:40pm

I’m so sorry Maria - you have found the right place for support and to ask questions!  There seems to be an upswing of FFA diagnosis over the past few years (from what I can tell....).  Just out of curiosity - have you used Botox in the past 5 years or so?  How far has your hairline receded so far?  Good for you that you have your eyebrows.  Just know, there are solutions.  The most difficult part is accepting what it is that we have and having to deal with it.  I first noticed the hair loss in late 2007.  My hairline has receded about 1.5 inches.  “Sideburns” are gone.  No eyebrows, no hair on my arms.  Didn’t even notice the hair loss on my arms until I looked after hearing about it on this site!  My hair is starting to thin on the crown now - so scary.... BUT, as I said earlier, there are a number of solutions.  Hair pieces are so natural looking these days.  Everyone here is very supportive.  You have found a safe haven.  Let us know how you’re doing as you go on this journey with many others.  You are not alone!  

Permalink Reply by 2Dachshunds on August 7, 2018 at 10:45am

Thank you!  I have not measured in cm but at least 1 finger from original hairline in the front, the temples looks like a couple of inches and the sides a couple of inches, that part still has some hair but super thin.  

I have done botox several times in the past and I actually asked my derm if she thought that had anything to do with it.  She made a good point which was that if botox were doing it, she would have lines out the door with women who have had botox, so not sure there is a connection. I also know someone who has ffa and has never had botox.

I started the CBD oil, under tongue, and cbd salve that I rub in to hairline and red areas.  I just started.  Also still waiting on tacrolimus in cetaphil cleanser which should arrive today.

Thanks for being here!

Permalink Reply by Bloomingdalekid on August 7, 2018 at 11:26am

I am convinced that my FFA was triggered by Botox.... I know FFA is really caused by autoimmune disease, but is it possible that Botox triggered the autoimmune disease and therefore is somehow related?  There isn’t a dermatologist in town that would even consider that a possibility since Botox is their bread and butter.  I accept that I have this - and no matter what the cause of the autoimmune disease to be triggered, it is just my theory.  I just find it interesting that since women have openly had Botox that FFA has flourished.  

Permalink Reply by 2Dachshunds on August 7, 2018 at 11:31am

Interesting, I see your point. Maybe it did.  I do wonder too about stress & hormone fluctuation since I have definitely had both.

Permalink Reply by Mishkatty on October 19, 2019 at 7:05pm

I have FFA, never had Botox, just a very stressful move between countries. Moved at the end of 2017, lost my eyebrows and leg hair by mid 2018, diagnosed 3 days ago. Everything still new but this forum is a life saver. 

Permalink Reply by BubbaLu on August 6, 2018 at 11:50pm

2Dachshunds,

i was diagnosed this Spring - a very shocking diagnoses.  I go through waves of denial and acceptance.   I had a few sweeping bangs cut to help hide the hairline.   Unfortunately, it is depressing when you have to get more bangs cut because all your bangs are disappearing.  I am hoping the Plaquenil helps.  

I also was injected with steroids, only a temporary solution, for about 6 weeks.  I also have “dimples” where the injections were.   They are beginning to fade, my doc said they would.   She has had one other patient with this in her 15 years of practice.   

Permalink Reply by 2Dachshunds on August 7, 2018 at 10:49am

Thanks, I saw your post about the dimples and looked and discovered I had them too!   My derm also said they would go away in a couple of weeks.

I hear you on the waves - I felt sick to stomach but now it is less so, maybe I am moving into acceptance, I take my hair for granted that is for sure.

My hairdresser cut my hair kind of shorter just recently, to try to hide the loss if I pull my hair up. I need to get some sweatbands for workouts though.

Im going to start the AIP diet, see if that helps too.

Permalink Reply by Diart on August 7, 2018 at 10:20am

Maria, I can relate on the stressor level. A year ago my hair loss became noticeable and a new dermatologist asked if I knew I had FFA. I was in the midst of purging 80% of belongings, selling a house, building a house, living in a small RV and a multi-state move. For years I kept getting thyroid tests due to eyebrow loss that came back OK. No other docs ever mentioned it. When I look back at photos, I believe FFA started at least 6 years before it was noticed. Stress of another kind was a factor then too. Any time we experience a loss we go through the 5 stages of grief: denial, anger, bargaining, depression and finally acceptance. Let yourself go through the stages and don't act out of desperation. In the last year I've learned this isn't the end of the world; most people don't notice (not yet anyway) and AIP diet (auto-immune protocol) and stress relief (meditation, yoga, acupuncture, massage, essential oils) do as much or more for me than medication (Finesteride). I believe healing (and dis-ease) come from within. Peace is an inside job! You've come to the right place!

Permalink Reply by 2Dachshunds on August 7, 2018 at 11:05am

Thanks Diart:  I think I am a little stuck on the grief stage of denial!  I dont want to have this.  And I am working with a health coach because I have not been able to lose weight and feel lethargic all the time so she has recommended AIP and essential oils, massage, yoga, meditation.  So I am getting the message loud and clear.  I also started bike riding again, last 2 days 5 miles, not a lot but a start. I think getting moving helps improve my outlook too. I put my lavender oil on wrists this am and had a nice drive to work.

My derm did not want to put me on finesteride, so I hope doing the inside work will help as well as the cbd oil though it is just the otc kind because I cant get prescription kind here in TX.

Thank you!

Maria

Permalink Reply by Halfbakedwho on August 7, 2018 at 5:22pm

Hi to you, Maria! Glad you have found us here! I haven’t posted in a while, but I remember how upset I was after my diagnosis about a year ago now. I’ve lost about 2 inches from a band in front of my head. On the right side it’s more severe, with it starting to creep back behind my ear, and on top it’s much thinner too. I am 52 also, and first noticed hair loss at age 49. 

I cried at first -  I felt it was some sort of nightmare, then after my first specialist’s appointment I convinced myself that the meds she’d given me were working to stop it and I was fine. This wasn’t true - I mistook baby hairs for regrowth - and had more of them from minoxidil. 

I have seen two specialists. I live in France so all the specialists for this particular condition are only in Paris. The first one believes that it was initiated by the Brazilian straightening process I used to get (I have very curly hair). Each time I’ve seen her she tells me again how that probably started it off, and how everyone responds differently to it (straightening), and how a predisposition to this disease can get activated with something like that. The other doctor was non-committal on the causes. I was started on Clobestasol and Minoxidil. The latter only helps to stimulate unaffected hair follicles so can’t really have any effect on the disease. 

After reading the effects of Finasteride I WON’T take that stuff. I don’t want injections - I don’t think they work. I am on Bethamethasone creme now. My scalp feels irritated on top, and numb where the hair is gone, and it feels like the creme helps the irritation at least... 

I am now menopausal. The year before my diagnosis was really terriby nastily stressful (getting another Master’s degree in another town, nasty professors, the loss of someone important to me, etc.). So a combination of things came together and made this mess I think - menopause and/or perimenopause, stress, and Brazilian straightening - all of it did something to me.

I also think for those who mention Botox and fillers that this could be true too - for you. Maybe we all have something that sets our bodies off into an autoimmune reaction. I noticed my hair loss before I started getting Botox and fillers, and never made the link. I still get the injections because I am trying to feel okay about my face at least - given the hair thing now. 

I consider myself lucky to still have eyebrows (knock wood!) but my hairline is still going, going...

Anyway, a year in, a bit less hair, but I’m feeling mostly okay now. I have my freak-out times but mostly am trying to go on with life and not obsess too much. I have looked into how I will cover this later on, and that is a comfort to me. 

Take good care,

Permalink Reply by 2Dachshunds on August 7, 2018 at 6:04pm

Thank you for your story!  Freak-out is a good way to describe it, I felt this sudden panic.  

Even by going to 2 specialists sounds like there are not many answers or quick fixes.  Well, I am not sure it will be worth it to travel to NYC only to be told the same information I already know.

I've tried the injections 3 times and I don't think they have made a difference either.  The third time I had a lot of pain that night too.  

Are you still taking Clobestasol?  I have heard others mention that drug.

Maria

Permalink Reply by BubbaLu on August 7, 2018 at 10:04pm

I think the injections are a way for Western Medicine doctors to ease into Plaquenil. The injections pretend to make it better for a week or two.  It’s just BULLSHIT.   THEN AFTER IT DOESNT REALLY WORK, move to Plaquenil.     I’m not so sure about that either.   

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