Replies to This Discussion

Permalink Reply by Classical Anne in NC mountains on June 3, 2017 at 11:01am

You're very welcome, Leigh.  I don't know what your derm has suggested, but I would recommend starting with 6 week intervals, eventually spreading to 2 months, but not more.  I found that when I had to miss a session, the loss did seem accelerated.  And unfortunately, there's no way to make up for the missed timing, as there's no going back once the follicle self-seals.  

When I was first diagnosed, and nearly drove myself mad studying the disorder and treatments, I thought I'd be bald by now.  My MD and I are truly satisfied with the very slow pace of my hair loss.  And so grateful not to be adding any more systemic medications to the pharmaceutical soup already in my besieged body.  I whole-heartedly recommend the injections as a first line defense.  Good luck with it -- I truly hope all goes well for you!

Permalink Reply by Leigh on June 4, 2017 at 9:10am

Hi Anne -  I'm exactly where you were when first diagnosed, I've been spending countless hours over the past month on the internet reading studies and research about FFA.  I've had to stop because it's only increased my stress over this condition.  Per my derm, we've "caught this early" as you'd mentioned was your experience, too. I'm very happy to hear the treatment has slowed down your hair loss; if that's what it does for me I will be very grateful. My first round is this coming Tuesday.  I believe he said we'll be doing the six weeks apart, so it's good to know that's an effective schedule.  If I may ask a few last questions, and please forgive me if I'm imposing upon your privacy, what has been your pattern of hair loss over the past four years?  Was your hairline almost intact when you started the injections and has it moved back a few inches, or do you have more of a diffuse loss and thinning?  You had written that you wear a wig, hat or scarf when going out, so I'm just wondering what to expect as I move along with this, although of course I realize everyone is different.  Currently, in my case, there are thin, sparse areas above my ears, and general thinning along my entire front hairline. It's not that noticeable, yet, at least per my husband and a few friends .  My eyebrows have greatly thinned over the past five years, which I thought was due to menopause until I found out that's a hallmark of FFA.  Anyway, Anne, thank you again for your courtesy and good wishes, my very best to you, too!  :-)  So many things you've written have helped me greatly. I hope you're enjoying your weekend.  Warmest regards, Leigh 

Permalink Reply by Classical Anne in NC mountains on June 5, 2017 at 12:43pm

Thank you, Leigh, for your honest appreciation! It really does help to have someone to talk to, and I don't mind the questions. Just sorry if I kept you wondering -- I just don't check the site so often, altho I was on it regularly, daily, almost hourly, when I was first diagnosed.

Briefly, here is my story. I was not aware of much thinning, except in one small area in the upper back [which my stylist kept trying to tell me was a 'cowlick', though I knew it wasn't]. I had been losing eyebrows for a few years, but, like you, thought that was just natural aging. But I had an on and off red rash on areas of my face which I wanted checked out. Then I noticed almost prickly little bumps at the center of my frontal hairline. I first thought that it was stubbly new growth, as I had been on mega doses of Biotin supplement. But then I realized that my widows' peak was nearly gone [I had always had fluffy bangs to one side, so did not often scrutinize my hairline.] This sparse, stubbly area then actually concerned me, and I made an appointment with a dermatologist. She named the rash rosacea, but was curious about my eyebrows, and totally stumped about the frontal hairline. She did a plug biopsy which came back with 2 wild diagnoses: FFA and ringworm. She knew nothing about FFA [I was her first] and she was stunned to discover ringworm on my scalp, as was I. There was an Rx for the ringworm, but she had to do some studying to come up with any remedies for my hair loss. But by that next appt., I had already scoured the internet and discovered this site, so I was armed with ideas. Together we agreed that the non-systemic injections were the best option, as I am already on 34 prescription capsules daily, for a wide variety of autoimmune diseases and disorders.

From that first round of injections, the first 2 years I simply saw a very slow retreat of my frontal hairline, and eventually great thinning of my temple hair. But by the 3rd year I realized how much thinning was going on all over my head.

It was only a few months ago that I asked my hair stylist to cut it shorter but leave a little 'sideburn' in front of my ears. She lifted my side hair and said "I'm sorry, but there's no hair above your ears to trim." I had not realized that all my side hair was coming from near my crown.

So, into my 4th year, I'd say I've lost about an inch above the ears, and a bit behind the ears -- all areas that are smooth and totally bald. My frontal hairline and temples continue receding with sparse stubble left behind. Along my forehead there is a smooth, hairless band before the stubble that is just a little more than an inch. That's all. And as I had a rather low hairline to begin with, it's not nearly as frightful as I once feared. You will find that the area where the disease has moved on is left very smooth and shiny. The follicles are so neatly and totally sealed that it's difficult to find makeup which adheres to that skin. However, if you can maintain some bangs, however sparse, you can camouflage your shiny forehead.

Around home, my sweet husband insists my comfort level outweighs my appearance. The areas where there is stubbly partial loss are none too happy with any tight coverage. Even fabric headbands begin to cause itching after an hour or so. I splurged on an entire wardrobe of headbands and scarves when first diagnosed. My husband patiently agreed it was good retail therapy -- it just helped me feel like I was doing something about it, rather than complaining. On days when I cannot seem to bring any bangs forward [gone are the days when I smugly smirked at balding male comb-overs!], I most often wear a scarf, rather loosely tied. It is only when I go to church, to various meetings, etc. that I wear a wig. I have 3 and I'm very happy with them, but they do cause my scalp to complain eventually.

Other areas of loss: I was shocked to one day realize I had not a single hair on either arm. But I maintained hair on my legs, wondering where the justice was in that. This year I am finally losing a fair amount of leg hair, but still have enough to require regular shaving.

However, the area you have not mentioned is the eyelashes. My eyebrows are almost completely gone now, just two colorless patches nearest my nose. And then the eyelashes started thinning, and somehow shortening. Although I put it off for 3 years, I finally filled an Rx for generic Latisse applied along the upper lash line at bedtime. This actually works! After 4 to 6 weeks I was delighted with my longer, thicker lashes. Not as thick as my youth, but such an improvement over the FFA detritus. As for the eyebrows, if it's caught early enough, Rogaine foam and/or Elidel cream can make a big difference. I was pleased enough that I stopped the daily hassle after a while. By the time I realized I had lost all progress, it was too late to bring it back. The potions have lost their magic. Another option that is popular with several of the ladies on this site is micro-blading, a type of semi-permanent tattoo. Unfortunately, it's rather expensive, and has to be redone fairly often. It wasn't an option for me, but seems to make others quite happy.

It would seem I've told you everything there is to know about my own FFA, but honestly I do not mind further questions at all. Good guidance and moral support are priceless, and I'm happy to share. Truly.
Very best wishes,
Anne

Permalink Reply by Charlotte on March 18, 2015 at 6:26am

Dear Anne

Thank you so much for your feedback.

yes, my skin also used to be smooth, but now its rough and I'm "only" 34. But as you said, other people may not notice this the way I do. 

I'm not receiving any injections but I apply Diprolene cream (a topical corticosteroid )daily. Since then I also notice veins on my forehead and I also have "dents". I asked my derm if this could be a side effect, but she didn't know. Will this be permanent??

In Mai I finally have an appointment with a Swiss hair specialist, but I'm afraid that he'll  describe some "harder drugs", since my hairless is still active. sometime I wonder if it would be best, just to shave the hair and start wearing a wig. would this be helping in accepting the hairless?? I don't know - but I don't want to take strong medications with risky side effects. 

sorry for my bad English 

pS. North Carolina must be a beautiful place :-)

Permalink Reply by Molly on March 23, 2015 at 7:22pm

I just saw this and thought I would respond. The original reason I went to the dermatologist (Nov 2014) was not for hair loss but for a "rash" that I had on my face for over six months. I had tried everything I could think of to get the rash to go away to no avail, so I finally made an appointment with a dermatologist thinking a few creams or so, and i would be done. Wrong! She studied my face and thought it could be dermatitis, but when I mentioned my eyebrows had been falling out, she did a biopsy at my hairline and diagnosed me with FFA. I hadn't even noticed my hair loss. I had known that my bangs would never lay right and my hair seemed somewhat thinner, but hadn't really noticed that my hair was getting much thinner all around the edges of my face. My derm thought the rash (which is more concentrated on my forehead, and checks) was the same process as what was happening to my hair. The small hair follicles on my face were becoming scarred. I have been using Elidel on my face and eyebrow area and a liquid (can't remember the name) on my hair line. I'm still much more distressed about my face than my hair. The whole rough appearance has aged my face by about ten years, and there is a burning and itchy feeling almost every day. I can't stand the feeling of my hair against my face because it is almost painful, and I have worn side-swept bangs for years. The derm didn't offer any real hope to change the texture of my face with any treatments because, as long as there's inflammation there, the treatments won't work. I'm debating whether I want to try oral medication or not.

 I try to see things in perspective, and know in the scheme of things, I could have something much worse. I occasionally get in a funk and feel down about how my face looks and how much of my hair I will lose. It helps to have this site and know that other people are dealing with the same thing. Everyone I have told about my symptoms or FFA have no clue what I am talking about--and say all the wrong things:)

Permalink Reply by Charlotte on March 25, 2015 at 2:04am

Thx Molly. It's like reading my own story. I also went to the derm hoping she would describe my a cream and everything will be ok. she had no idea so I went to an other dermatologist who diagnosed FFA in Nov. but he also didn't have an idea what my skin problem is. now after seeing two more skin specialist they think its the same disease. 

my first derm made a biopsy showing that I have rosacea. she prescribed me isotretinoin which I hade to take a few month. It really changed my skin but as soon as a stopped the treatment the facial papules came back. Well taking isotretinoin for a long time can not be a solution because of the side effects. 

i spent hours looking up articles or images in the net to find out whether someone is having the same skin problems. well at least  I found this article http://archderm.jamanetwork.com/article.aspx?articleid=1105186

in this study patients received therapy with oral medication which improved their skin. 

I have to ask my specialist in may whether this could be an option. 

There are days when I think that I can live with it, but looking in the mirror is frustrating because it reflects not the person I used to be. and many people in my environment have no idea how this feels like and how it has an impact on everything. I sometimes worry to meet friends because I look different (not in a good way). Last time someone from work said to me: "oh, your hair is pretty, I wish I had your hair." I had to go away hiding my tears...

well, it's another day and I try to think positive. :-)

greetings

Permalink Reply by Molly on April 10, 2015 at 11:52am

Thanks for the link. I had not been able to find any info on how the FFA might effect facial skin. My dermatologist said it was the same process as was happening to my hair, but I couldn't find any examples of it happening to others. I'm debating whether I want to try oral medication. It's not just the appearance of my face, but it feels itchy, burning, almost painful (especially when my hair touches my face). I have good days and bad days, but the bad days drive me crazy. I find I'm much more self-conscious because of my face, my hair, and the fact that I've lost most of my eyebrows. I always had somewhat thick eyebrows so have never had to use eyebrow pencil--I don't even know what I'm doing:))

Okay, enough of the negative, things could be much worse:)

Permalink Reply by SandyA on April 10, 2015 at 9:33pm

Charlotte, thank you so much for sharing that link!

All the many dermatologists I saw did not mention any correlation between changing skin complexion and FFA so am wondering if they are even aware of it.

Permalink Reply by Classical Anne in NC mountains on April 4, 2015 at 2:36pm

MOLLY, why was Elidel prescribed for your face?  It is a good prescription for eyebrows, and has meant total recovery of those precious eyebrow hairs for some.  In my case, my brows were completely bald before I started on Elidel, and alternate with Rogaine.  There is now enough to make the brow makeup look a lot less like makeup.  Several ladies on this site have been using Elidel on their hairline as well.  But I've never heard of anyone putting it on their face.  If it's function is to bring back lost brows and hair, how could that be helpful to facial skin already suffering with rash and discomfort?  I hope there's a good explanation with real hope that it will relieve your face.  Otherwise, personally, I believe I'd drop it altogether from my face. 

Permalink Reply by Molly on April 10, 2015 at 12:04pm

Thanks for your reply. My dermatologist told my that the Elidel was for the inflammation on my face just like the inflammation was effecting the hair follicles in my eyebrows and hairline. It has helped with the redness of the scarring on my face. Thanks for giving me reason to research other treatments. My face burns, itches,etc, and this happened before treatment. The Elidel has helped in reducing those symptoms, but I will continue to look at other treatments. I have tried alternating with coconut oil or Vitamin E, but I am still looking for something that might give me more relief. 

Permalink Reply by Classical Anne in NC mountains on April 10, 2015 at 2:08pm

Did your derm not think it was rosacea on your face?  Mine burns a little and is sensitive to touch, but nothing like the symptoms you describe.  I use Rx metronidazole [sp?] cream for that, but actually find it's better if I just leave it alone when it acts up.  Most days not bad.  Good for you continuing to research.  It's up to us to be proactive with our treatments.

Permalink Reply by SandyA on April 10, 2015 at 9:27pm

Molly, what is the color of your rash?

 

My rash started as small spots of brownish hyperpigmentation on the sides of my neck early last year. The brown hyperpigmentation has since spread across my entire neck and on one third of my face (it looks very similar to melasma but with indistinct borders) with sporatic red inflamed areas throughout. Some areas in the more center part of my face, like the center of my forehead, under cheeks and sides of mouth, look like very small red starfishes. Like you, it is worse on the forehead (especially the sides) and the cheekbone area (the temple area). I have seen countless doctors and all are amazed by this "rash" (I put mine in parenthesis too because it isn't a typical rash) and say they have seen nothing like it before. It first appeared on the neck at about the same time as I noticed the tiny bumps on my face. Was wondering if your rash sounded remotely similar. 

 

You are definitely not alone--I too have aged tremendously in the past year. Sometimes I look in the mirror and don't recognize the face staring back at me. I think it more difficult because it is happening so suddenly while others can adjust much more gradually to the aging process. I've always admired those with a terminal illness who have come to acknowledge the truly important things in life so am trying to take that inspiration and use this as an opportunity to do the same.  I admit, it is a mind game sometimes. We are just forced to come to terms with these things that come with a long life sooner rather than later. I guess what I'm trying to say in a long-winded way is that I can relate to your feelings and hope that you do not feel bad about having them.   

 

Also, have you decided about taking oral medication? I am debating myself since I have this other stuff going on that may be resolved by the meds. 

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