Replies to This Discussion

Permalink Reply by Camie on May 4, 2014 at 7:58pm

Hi Anne,

I was diagnosed with FFA about 2 months ago but I think it started happening about 3-4 years ago maybe longer.  I always had a high hairline anyway.  I was bothered more by my scalp stinging and itching and when I asked my dermatologist she kind of just blew it off.  I mentioned it to my hairdressers and they thought it was some kind of dry scalp problem.  Also,  I had been dealing with major hot flashes and hormonal imbalances and have been taking bioidentical hormones.  So....I think I just didn't think I was losing my hair.  I do remember training for a 1/2 marathon last year and wearing a scarf (like a ninja--haha!) to keep my sweaty hair off my face but I think now I was embarrassed about the high hairline.

Now that this new doctor pointed it out to me and asked me if I had hair on my legs still or my arms--I said I thought that was just a menopause "bonus"--no more shaving my legs.  That has happened in the past 3-4 years again.  My arms have very light hair anyway and I didn't even notice the hair was missing!!!  Duh!  My eyebrows have always been really light.  Even in that "before" photo I have them penciled in but still they were barely there.

So, since my diagnosis I have kind of been numb, in shock.  I go back and forth with my pity parties to just not thinking about it.  I was diagnosed a steroid ointment to use 2 weeks on and 2 weeks off but my forehead got weird and vein-y looking and I got some large pimples.  So.....I use the ointment if I notice my hair follicles getting red and irritated but only then.  

Now that I have been paying attention to my hairline I do see where it is receded quite a bit especially over my ears and basically all around.  One thing that I will mention is I went and saw an endocrinologist and asked her about my diet because the derm dr said there was no relationship between diet and FFA.  She said because I have auto-immune issues like Hashimoto's (thyroid) Disease I should definitely be gluten-free and dairy-free.  So, I have been trying that for the past two month to see if it will call my inflammation down.  The jury is out on if it is working for me but I'm getting a little snappy about this diet and I would like to healthy but not so restricting.  

I'm sorry I'm getting so chatty but it is just mind boggling to me and I'm sure to you!!  I have only seen my dermatologist once and he did not suggest any injections yet...I don't know.  I'm hoping maybe this will all be over with soon--I can deal with what I have left with my short hair and just put my ego aside but I'm not sure what I will do if it get really bad.  As far as the Google searches....ugh.  I say stop the insanity!!!  All that just puts me in a tailspin!!!  I am trying to control what I can right now--so that is why I did the eyebrow tattooing :)  Too bad we can't tattoo our scalps!!!! hahaha!!

PS--I'm interested if your story too!  One thing I am thinking about is it a hereditary issue?  My mom also had a super high hairline and maybe even FFA but we never talked about it and she passed away 3 years ago.  If my hairline stops where my mom's stopped than it's all good!! I can deal with that!!  I just don't know though?!?  

Thanks for letting me download :) Camie

Permalink Reply by Classical Anne in NC mountains on May 4, 2014 at 9:39pm

Camie, I appreciate all the chatty, altho I'm not really contributing much to Anne Louise's eyebrow discussion.  I would say I have lost 2/3 to 3/4 of both eyebrows, from outer to inner.  That is to say, well more than 1/2 of my outer brows are missing.  Closer to my nose, they're still extant, but significantly sparser and have turned white, so basically invisible without makeup.  I live in a small town and would have to travel more than an hour to find an eyebrow artist, as I do to get to my dermatologist every 6 weeks.  Have not yet made my mind up for the cost of specialized tattooing.  This week, though, I find that my eyelashes are quietly slipping away as well.  Somehow, this saddens me more than the hair or the brows.

Like you, I was aware of the receding temple hairline for a couple of years, and assumed it was part of the joys of aging.  I did not seek any medical attention until I began to see the odd reddened follicles at the top of my forehead.  They felt a little rough to the touch.  I'd been on mega-dose biotin for a while, and wanted to believe it was stiff NEW little hairs popping out.  But when the stinging sort of itch became a constant irritant, I decided to ask my GP about it.  She seemed to take that and the loss of eyebrows seriously enough, and referred me to her preferred dermatologist. 

The derm was immediately intrigued, saying she had never seen anything quite like it.  She asked if I would like her to take a biopsy plug for analysis.  This was last August, 2013.  The biopsy came back FFA, and bizarrely enough, also ringworm!  She has a busy practice, and according to the waiting room, a lot of older patients.  She said I was the first case of FFA she'd seen, and that she'd never even heard of a 'mature' adult getting ringworm on the scalp!  We still don't know where that came from -- I don't have contact with school aged kids, etc.  So I began a prescription for the ringworm, while she began researching the FFA.  At my follow-up visit, she suggested the steroid injections.  I have an unusually large collection of autoimmune and other chronic disorders, so was not anxious to add steroids.  She assured me the dosage was minute, and not systemic.  And as I was not a good candidate for any of the other known treatments, I said "sure" -- anything reasonable, rather than the frightening prospect of going bald.

So I've been getting the injections since then, with no adverse effects.  And contrary to some scary [if you'll excuse the expression: whiney] posts elsewhere in this forum, I refuse to characterize the process as painful.  It IS irritating, and not a little weird, but that's the story of the FFA itself, right?  Unlike the many folks with AA or AU, our scalp is already scarring and inflamed.  I thought it was definitely worth a try.  The inflammation now varies from day to day, for no known reason.  But overall, I have to say it has bothered me less since I began the injections.  And my hairline has receded only another centimeter or two, in eight months.  I am grateful for that!

Also, the rosacea on my face that was diagnosed at the same time [I had been aware of it for a full year, without knowing it's name or etiology] has remarkably improved through these 8 months of injections.

So if discomfort, fear of needles, or fear of adding steroids to one's system, are the only reasons for refusing that treatment, I would say to anyone hesitating, go ahead and give it a try.  Of course if insurance denial is a factor, I know that it is expensive treatment.  And there are some potential side-effects, but I have not experienced any.  And that alone is a unique endorsement for me.

In your case, Camie, regarding your smiling photo, it looks as if you might escape the need for a wig altogether.  Especially if you've always had a high forehead, so your image is not significantly changed beyond what you might expect with age.  In my case, having always had a low forehead and a strong widow's peak, my face does look altered.  But, I hope, far from hideous!  I am also now experiencing Female Pattern Baldness, so my scalp is easily visible among the remaining hair.  Well, quite visible to me.  I doubt it's obvious to anyone outside my family.  But it's enough, combined with the creeping forehead line, for me to prefer wearing wide headbands and narrow scarves.

It's hard to say if it's hereditary in my case, as my mother was born with a high forehead.  Her hair was definitely thinning her last few years, but she was 93 when she died!  Her father was bald, but her mother [and all her sisters, aunts, female cousins, etc.] all kept reasonably full heads of hair.  On my father's side, he had a moderately receding hairline by the time he was retired, but never bald [he died at 80].  I did not know his father, but my paternal grandmother had a beautiful, enviably thick and healthy head of hair when she died at 99!

Well, I'm even chattier, aren't I?  It's just so nice to be able to share stories, concerns, and results with this caring group of ladies.  May I friend you?  Let's keep in touch.

Annd

Permalink Reply by Mareea on June 6, 2014 at 7:49pm

Great photos. The feathering is very good and the smile is terrific.

 

Permalink Reply by AC from CA, USA on May 11, 2014 at 3:52am

Hi Camie,

I am now looking for an expert eyebrow artist and am also in California. Yours look much more realistic than I've seen elsewhere. Who did them and where is this person located?

Thanks,

AC

Permalink Reply by jess on May 6, 2014 at 5:02pm

I got my eyebrow tattoos three weeks ago.  They looked absolutely amazing for 2 days then they faded drastically.  I go back one week from today to have them put on darker.  It is amazing how much better it makes you feel.  My eyebrows are completely gone.  Brenda would you mind telling me where you are going?  I live in Louisville, ky and St. Louis is not too far from me.  I just like to check out other places.  Mine were also $450....

Permalink Reply by Brenda, IL US on May 7, 2014 at 11:13am

Jess I went to So Natural at 8044 Manchester Rd in St Louis yesterday.  I decided to go with eyeliner also since my lashes have started coming out too.  My brows are very dark now and my eyelids are red and swollen along the lash line so it will be a few days before I'll see fading.  One brow is a little more arched than the other but Cheri will fix that my next trip.  The A/C wasnt working and then her surgical light went out so we shouldve stopped but she continued in poor lighting.  Then lights and A/C came on and thats when arch was noticed.  All in all I'm pleased.  Cost was $850 but will be worth it.  

Permalink Reply by Classical Anne in NC mountains on May 7, 2014 at 1:19pm

Brenda, please be sure to let us know how it turns out, after a week or so.  For some, that's a major investment with uncertain results.  Hope you end up very happy with yours.

Anne

Permalink Reply by sallylwess on May 9, 2014 at 1:30pm

Thank you so much for posting this about your experience with getting your eyebrows tattooed.  I have a file that I keep on my computer and just added Jamilla's site to my file.  I am so impressed with her work, and with your photos, that I am seriously thinking I can make this work for me.  I live in Colorado, but I plan on going east to visit my son later this year.  I also have a very dear friend in Vermont that I could stay with while I have this procedure done.  I have checked out a few places in Colorado, and I will do a consult with them, but I honestly think this looks like the best place I have seen so far.

I understand all the emotions that you have expressed.  My journey with FFA is similar to yours.  I will soon write about the entire journey.  I actually consulted my first derm on this condition on April 6, 2006.  I had a such inflammation on my hairline that I had a sore.  I had no idea what was going on.  My doctor dismissed it as psoriasis and said to leave it alone unless it itched.  The derm also thought it was psoriasis and gave me a hard time because I was putting Listerine on it.  (I know that IS crazy!) Believe it or not, it stopped the itching and the calmed down the inflammation a bit.  I also thought it would keep it from getting infected.  The derm asked me if I also used Windex (referring to the movie My Big Fat Greek Wedding.) and totally dismissed my condition as one a crazy lady would have.  He told me to leave it alone, not to use any hair products, and to put a protopic cream on it if it itched.  I saw another derm who said I had some sort of alopecia.  Then, I lost my eyebrows.  My primary care doctor actually asked me if I was plucking them too much.  Seriously, she did.  Finally, my endocrinologist who treats me for Hashimoto's, and who had suffered from alopecia herself after her pregnancy, told me I need to have a derm biopsy it.  Finally, in March of 2013, after losing all of my hair on my legs, my arms, my eyebrows, and about an inch and a half of my hairline, which showed scarring, I was diagnosed with FFA after a new derm did a biopsy.  He also was dismissive because he said there was nothing to treat the condition with that was effective.  I promptly dismissed him also and am seeing a new doctor.  

I did see a specialist here in Colorado who prescribed Avodart.  That is a drug for men with enlarged prostates.  Have any of you heard of that treatment?  I thought he was crazy and so did my pharmacy.  My new derm told me that this is a drug that is being used with success to treat FFA.  I passed on trying it.  I am too old to mess with my system at this point in my life.  I will stick with trying to live with the hair loss.  The first step for me is to get my eyebrows done.  Thank you so much for this resource.   I truly am sorry that you also are dealing with the emotional roller coaster that is FFA.  

Permalink Reply by Camie on May 9, 2014 at 2:50pm

Hi Sally,

I just read your post.  I am glad you are going for the eyebrows!!  It has now been a week and I still am SO happy with the look!!  I think I even could go a little darker now that they are mostly healed.

I am interested in your comments about all you have gone through with FFA and getting diagnosed.  I kind of had the same thing happen with my dermatologist just blowing off my complaints about stinging and itching and pain in my scalp. My eyebrows were very sparse, no hair on arms or legs but I didn't even notice!!  I thought it was menopause....  I too have Hashimoto's and after my diagnosis I went to a endocrinologist to discuss my FFA because my derm just gave me a topical steroid and said there was nothing else to do--no cure.  The endo suggested a strict anti-inflammatory diet (no gluten and no dairy among other things...).  I have since attempted no gluten and no dairy but am slipping because I am such a foodie!  I have been eating VERY healthy though and have not eaten processed foods.  My scalp seems to have calmed down so...maybe there is something to this.  I am just wondering--are you on any special meds for your Hashimoto's or diet??  The only medication I am on now is bio-identical hormones because my hot flashes were epic!! And also that steroid ointment for my scalp--when I am sensing a flare-up.  Thanks for your input--we are all on this crazy ride together!!! Camie

Permalink Reply by Classical Anne in NC mountains on May 9, 2014 at 3:18pm

Camie and Sally, Hashimoto's is also one of my autoimmune disorders.  I have taken several different thyroid medications, but have been on levothyroxine for the past many years.  As for those other pesky hormones, we tried every HRT in the books and nothing could put a lid on my hot flashes.  They started at 43 and now I'm 64.  After 21 years, I'm afraid to think of the consequences to my heart, as the flashes are always preceded by an adrenaline rush and a significant increase in my pulse.  Thankfully, though, at this point the 'power surges' are down to only about 4/day -- a far cry from the 3/hour that plagued me for years!

I look forward to hearing more of your stories, both of you.

Anne

Permalink Reply by sallylwess on May 9, 2014 at 5:59pm

Classical Anne, I also started having significant issues with heart arrhythmia about the time I went off of bioidentical HRT.  Interestingly, the very first serious arrhythmia I had was when I was 45 years old, which was when I had my very first hot flash.  I got so flushed and then I turned white and then I nearly passed out from my heart racing so fast.  I was at work.  My co-workers quickly made me sit down on a chair.  Then, one drove me to the doctor for an EKG because they insisted I have one.  Once I was on hormones, I noticed few events of tachycardia or arrhythmia until I went off of them.  I now am under the care of two cardiologists.  I am 69 and no longer have hot flashes.  I do think that FFA and hormones are very much related.  How, who knows?  I also find it interesting that we have Hashimoto's.  When my thyroid is out of balance my heart and hair issues are also more severe.  

Permalink Reply by sallylwess on May 9, 2014 at 5:39pm

I just had my gallbladder removed on April 4 and developed an abscess.  I was very ill.  During that time they put me on two antibiotics.  I had a terrible flare-up on my scalp.  I think it was from all the inflammation in my body.  I only use the steroid on my scalp - clobetasol.  I also have lichen scerlosus that was just diagnosed. I am looking at going on the anti-inflammatory diet as outlined by Kathy Abascal http://www.toquietinflammation.com/index.html  In fact, I just took her class.  I hope the start this way of eating within the month.  I believe it will help me feel better and perhaps it will help stop the hair loss.  I only take synthroid for the Hashimoto's.  I was on bio-identical hormones for years for the same reason you state.  I stopped taking them about the time this FFA problem started only because I decided I didn't want to be on them anymore.  My gyn will not prescribe them for me now because of my hair loss.  She doesn't want to take any chances in causing a flare-up.  It is a crazy ride!

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