Replies to This Discussion

Permalink Reply by Sas Holland on February 2, 2017 at 4:01pm

Hi Christi,

your welcome,

I hope you will feel better and less stressed out as time passes by. I can strongly advise meditation  to help to cope.

Wish you all the best and good luck!

Permalink Reply by Airam-FFA on February 2, 2017 at 10:38pm

Thank you Sas Holland for posting your story. I saw another dermatologist consultant yesterday. It always leaves me feeling down after seeing the doctors, as the FFA condition seems so hopeless. The Dr measured my hair loss along my hairline - I have lost so much more hair since I started using the medication they prescribed to me in December - and only 6 weeks ago. I have Dermovate scalp solution that I stopped using after a couple of weeks as it seems to me that so much more hair has been lost - maybe just co-incidence; I also have Hydroxychloroquine tablets twice daily - this medicine can damage your eyesight - so worried about taking it - better to have hair loss than not being able to see.

From reading posts on here it appears that maybe no medication actually makes any difference to the condition.

xOx

Permalink Reply by Christi Q. on February 3, 2017 at 9:36am

I totally agree Airam.  The two "specialists" I've been seeing always just want to stick needles in me or do some drastic testing.  I never feel comforted by them.  I always just feel like they want my money and then they shuffle off to the next sucker.  It's totally defeating and depressing.

Permalink Reply by Kathy in Denver on February 5, 2017 at 9:45am

Thank you Sas! 

Permalink Reply by ammie on February 11, 2017 at 2:47pm

It's so hard to tell. I had my six month check up a few weeks ago and the doctor thinks my hair has thickened up a little bit since we last saw each other but I honestly can't tell. It's hasn't gotten much worse either. I'm taking finasteride, plaquenil, and doing Rogaine and Tacrolimus ointment. 

Permalink Reply by DragonandFox on February 11, 2017 at 4:07pm

Well, is the word "Burnout" or is it "remission"?  I was under the impression it's called "Remission."  I take 2.5 mg of Finasteride and apply Clobetsol solution every night and Clobetsol shampoo every morning.  I also was told to get acupuncture to address the inflammation, particularly because I am unable to take any NASID or Anti Inflammatory meds because of an ulcer that lays dormant (now) unless I take those meds.

I have however, most certainly have new growth.  thick wisps and some thin regrowth too.  It is close to my scalp and that's it but at least it's not bare bald as it was in the past.  Stress most definitely is a precursor.  I know it and my Dr. has confirmed it.  I have often spoke about my Dr. from Columbia Presbyterian Hospital in NYC.  She has received a grant to study the mother of FFA called, "Lichen Planopilaris."  I have been informed that this will be the first official data study to be conducted in the United States, or possibly the World since a study done in Spain in the 1980's which was not as comprehensive because at that time FFA was identified as a very rare disorder that afflicts only post menopausal women.

As many of us know, perhaps women are more often and than not the victims of this disease, a great number of women not even in pre menopause are afflicted, as myself.

The only thing I am wondering is, will the study include "immunotherapy?"

Permalink Reply by Airam-FFA on February 14, 2017 at 7:36pm

I wonder if your Dr is in touch with the research team at Guys's in London? They are also doing a study. Would be good for them to share their research ...

Permalink Reply by Terri on February 23, 2017 at 1:49pm

My Dermatologist prescribed Betamethasone Dipropionate 0.05% to be applied to my hairline and eyebrows. This lotion has decreased the red and itchy patches where I have hair loss.

Permalink Reply by Joy on February 18, 2017 at 1:42pm

Mine has burned out for the most part - I say that as I continue to have about a three inch area across my forehead at the hairline that is always slightly swollen and that is not even a good word - around the hair follicles - there are a couple hair follicles that are more swollen but they do not itch - continue to grow - have had no more hair loss actually since my initial shed going on four years ago.  I have tried what seems like a zillion things but I had no luck with the prescriptions from my dermatologist and refused some - I cannot say that he was helpful as he really knew nothing about as I diagnosed myself.  Currently I am using tea tree oil which has definitely improved it.  I am also using shampoo and conditioner with tea tree oil in them.  He thought that I was nut job since I did a lot of reading and research regarding what vitamins to take to get myself back on track.  I was extremely stressed and was not taking B complex and then had multiple medications for shingles and pneumonia given to me on the same day - a flu shot and another shot for osteoporosis with about a six week time frame - a perfect storm I guess as many of the others.  Still do not get why we lost hair of all things - just crazy!  I only lost about an inch all around and on one side in the back, had the change in pigmentation and the itching and pronounced veins like everyone else.  Definitely the lichen planopilaris may never fully go away but ....... at least I am not losing any more hair.  That being said I am always watchful as no one seems to know what really causes it so who knows if it will reappear.  I try to keep my diet 80 percent fruit and vegetables and 20 per cent protein.  Grass fed and antibiotic free meat wild salmon organic veggies only bottled water - I even have reverse osmosis at home in the ice we use and I only cook with that water - I also have an additional filter on our water to remove chlorine - have a salt water pool and a natural chemical hot tub.  I continue to warm woman who are stressed to take care of themselves and show them what can happen.  My bob hairstyle - which I get bored with occasionally - hides the deficits.  I am amazingly healthy - almost never say never get sick - I run and business and have lots of grandkids so am exposed to plenty of stuff.  I think that is also common with many of the woman.  I have also changed to only physical sunblocks, have continued to dye my hair and use mineral makeup.  I had a face lift about ten years ago and am considering a touch up - I do not want to reactivate it but I really do not believe that it will.  I am 69 this year. Any other info you need just let me know - I wish you well and hope your get to burn out as well.  As a final note I would say that I have actually not lost any more hair for about 3 years - the scalp issue continued for a lot longer but the milk thistle, adrenaplex, curcumin, and B complex and changes in diet have gotten me back to where I belong and hopefully will keep me there.

Permalink Reply by Nina Jones on February 26, 2017 at 5:01pm

Hello everyone - I have only really felt after 8 years of having this FFA horrible diagnosis, that perhaps I should finally submit to the inevitable, that this is a progressive, flipping condition. Or is it? That's the problem, isn't it, we just don't know. I have lost about an inch on my front hairline, and about an inch and a half at the sides, behind my ears. A couple of years ago I had some little hair like tattoos to fill in the bald side bits that were just perfect, but then, as the hair had receded a little bit again, I went back to the same chap, and the end result is hideous. I am embarking on laser treatment this Friday to get rid of them, and whether it is the stress of it all, but for the first time in ages - months/a year or more - I am experiencing inching, tingling etc and wonder if is it psychosomatic or real, and becoming completely obsessed with the condition, something I haven't experienced for ages.

Also, the guy who is doing the lasering - a doctor - to remove the tattoo, said that he didn't expect it, but there is a possibility that the laser treatment might trigger the alopecia to get really active, as it is just such an unknown entity. GREAT!!!! They can put people on the moon, fly people around the planet, build skyscrapers, and so much more, but can't figure out how to save a few blooming hairs on a lady's head!!   

Suffice to say, I'm feeling pretty miserable. It would be lovely to believe that there is burnout, eventually. Is it inevitable that all of us ladies will have to end up wearing a wig or a hairpiece? I read these forums and other stuff on google and it seems that is the case - or not??? Would love to have some positive feedback...          

Permalink Reply by DeniseC on February 26, 2017 at 6:13pm

I feel for you.

The thing is - almost certainly most people who come to this forum do so because they are feeling the same sort of things as you so clearly are. Obviously not everyone - but I think it is a fair assumption that those for whom the FFA has stopped, or for whom it has minimal impact, the need to offload and seek solutions is diminished.

Sadly (and I mean that literally) I have no magic words. My hair continues to creep its way into the ether: slowly, slowly, but seemingly relentlessly. And my own personal solution has been - as you say - a hairpiece (intralace system), which certainly makes an enormous difference to the way I look, and, crucially, the way I feel.

One of the worst things for me (other than the actual hair loss) is the lack of control over it. There seems to be bugger all we can do to stop it happening, it just has to carry on its insidious path, and I find that personally very difficult to accept. I have no choice - it just IS.

But I do have a choice on how I am about it, I suppose. Most of the time I am okay - I have an exceptionally busy and demanding life, with a great job and wonderful family. So I just get on with it. But I would be lying to say there weren't still many times when I just feel hacked off by the whole damn thing.

Nevertheless, I try. I try to stay positive and remind myself there are a million other, far more terrible conditions I could have. And that I am lucky - I am not 16 with no hair at all, and I have the money to pay for a hair system that I can (for most of the time) forget about and that looks natural, so no one knows unless I choose to tell them.

Because I truly believe that stress and negativity just feeds into the condition. Mine is, I firmly believe, linked to the lichen planus I had years ago and that is an autoimmune condition. And that in turn reacts to stress. So I try to stay positive, as I really do not want to make it any ******* worse!!!

Today, in Brighton (UK) I went to 'Sunday Assembly' a secular/non-religious monthly gathering of people who believe in community, and in their motto - Live better, help often, wonder more. The theme today was 'laughter' and two of the speakers - one an academic who has done research into the impact of laughter, and one an inspiring woman who does laughter yoga (!) - both emphasised the difference laughter makes to your mental health and your ability to deal with all the rubbish life can throw at you.

It's not always easy to laugh, especially when a part of you that is so fundamental as your hair decides to go walkabout . . . but I would rather laugh than cry!

So here's to laughter and to us.

x

Permalink Reply by Joy on February 26, 2017 at 7:30pm

I am right there with you!

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