Alopecia World
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Newly diagnosed in California
I'm 62, live in California, and have just been diagnosed with FFA.
I was diagnosed hypothyroid last fall and my hair loss was attributed to that. After I noticed about an inch of hairline loss, I Googled "postmenopausal female hairline" and up came FFA. I made an appointment with my dermo and told her what I thought I had and she scoffed. Until she looked at my hairline and then said I was exactly right. She said I have a 50-50 chance of halting the hair loss. She put me on Clobetasol lotion and said she'd do research. She called me just a few hours later with my Finasteride script.
On Tuesday night this week, she presented my case at the county dermatologists' board. About 30 doctors examined my scalp, asked me lots of good questions about onset and what I've tried. Then they consulted and wrote up a report for my dermo, which I'll get next week sometime. If there's anything new I haven't read on these boards, I'll be sure to mention it.
One thing my dermo said was that she might have missed the FFA diagnosis and instead said it was menopause-related. So she was actually good about it and clearly is interested in determining effective treatment.
My primary care doc is also very engaged since she has hair loss of her own. She gave me a script for Latisse that seems to be working on my nearly gone eyebrows. She uses a laser cap herself but I haven't read much on them yet. She also prescribed Cosmedix dietary supplement and Rogaine compounded at 6 percent. I haven't started the Rogaine yet - I've heard once you start on it you can never stop.
Thank goodness I found this board! I feel very alone in this as my friends say they can't tell and my husband says I am not my hair and that's nice. But I'm glad to have a place to talk about the emotional aspects of this.
This is pretty long - I'll try not to be so wordy in the future.
Replies to This Discussion
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Permalink Reply by Lo on
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I love that you are "wordy" as you say. Your post was super-informative, and happy to have you here. I, too, am taking finasteride - and have been for 17 months or so... I have FFA, and am 45 years old. It started at 38 for me - with the complete loss of eyebrows. I've since had them cosmetically tattooed and they are fabulous (if I do say so myself!). Welcome the group!
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Permalink Reply by Sad in chicago on
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I am considering tatooing, but am a little scared as to the outsome and what if I hate them? I know they remain very dark and prominent for several days after the procedure, but what is your experience? Thank you.
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Hey! I wouldn't be scared... As long as you do your homework on the salon you go with... How experienced is the technician... I went to one here in Pittsburgh that has a wait of about 2-3 months. Mine were a bit dark dor maybe 24 hours... But I actually didn't mind. Here's a pic. I love them.
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I also have complete eyebrow loss. I was afraid to get tattooed as well because of how permanent it is. I decided to try Microblading which is semi-permanent so if you don't like it it will eventually go away. I am so happy with the results that I will definitely keep getting touch ups.
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Hi
I, too, was misdiagnosed at first - 'it's just your age' - which was a load of rubbish.
When I was finally diagnosed, I was told there was nothing I could do other than try to boost my immune system, as FFA is an auto-immune condition. That is what I have done, and the hair loss, has (I think - but then it is all so very slow, who knows???) stopped.
My eyebrows going was the first sign, although I suspect now that my hairline was receding too, but I just wasn't that aware of it. I had the eyebrows tatooed about five years ago, and they are indeed great. And I now have an intralace system for the front of my hair/head which has transformed my confidence in the way I look. We have just got back from a very windy holiday in Suffolk (England) and it was LOVELY not worrying about being in all that wind. Yeay!
Use this site- it is a great as a means of support, I think.
Keep smiling!
Denise
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Denise - is your intralace system on the front attached to your regular hair - or is it bonded in the front with tape/glue - or both? Thanks.
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Hi
My story is a bit different, as I have had no redness or scarring at all, just the ever receding hairline, and the eyebrows disappearing. So when my GP (general doctor) told me the tests he had done were negative (he only checked for thyroid, which of course was nothing to do with it, but I didn't know at the time), and that it was due to my age, I just accepted it and carried on. I felt I had no choice, but really did not want to share anything about it with anyone as I felt like an ancient crone.
Eventually, however, after countless nights lying in bed worrying and countless days trying to deny it was getting worse, I went to a highly reputable and well-known integrated medical practitioner here in England (Julian Kenyon from the Dove Clinic) as we know him personally and know how excellent he is at diagnosing and treating the whole body, not just the individual parts.
And he diagnosed and put together the lichen planus I was diagnosed with years ago and the hair and eyebrow loss (and the chronic pain in my gut, too). His approach to the FFA was holistic - he told me there was nothing that could be done about the actual loss, but that to try and avoid any further loss we needed to focus on building up and balancing my immune system so my own body could better cope with the problem. So that is what we did. Additionally, I had all sorts of things - natural - to reduce inflammation in my body, which he said (through blood testing and an amazing, very high-tech imaging machine) was way up.
I went to him for several months and then we agreed that everything had settled - but I will go back if any symptoms flare up again.
I strongly believe everyone should do what feels right for them. I could now go back to my GP and insist on medication, but I am happy with how I am now.
The Intralace system has very much helped achieve this equilibrium. It is attached at the front of my head, to my own (thick) hair at the crown. Fortunately, I don't have any hair loss at all at the back, so that is all I need. The clinic regard it as a very small piece, but believe me, to me it makes a huge difference. And no one would know it isn't mine. It took me a while to get used to, and to get the colour match exact, but we now have it sorted and I am delighted. Really delighted. Not cheap, but so very worth it to me.
It's attached at the front by tape, as you need to be able to wash underneath it, but I simply forget it is there, and it is totally secure as the weaving into my own hair is so solid.
I have to go back every six weeks or so (but am planning on extending that to reduce cost), to have it tightened - as my own hair grows it pushes the intralace up a bit, but you really would not know as of course the tape pulls it down.
And every three to six months, they say, you have the actual hair replaced, as it eventually dries out, as, of course, it receives no nutrients from your body like your own hair does. However, I met one woman at the clinic who has a full system (completely bald) and who only has this done once a year, as she is so careful. So I am aiming for at least six months.
I wash my hair using the product they recommend - and wash and rinse it very thoroughly indeed twice, then apply a lovely conditioning mask, again recommended by the clinic. I leave this on as long as I can (once I week I apply it then get into a bath and read for about 45 minutes!) before rinsing it off. I use a heat protecting product, and am very careful about not using straighteners or anything.
And then, every two years you have to have the whole system replaced.
With regards to other people not noticing, my own hairdresser is a personal friend, but younger than me (I am now 65, she is 45). When I eventually talked about it to her (having talked to no one as I felt so ashamed - odd word, but true) she put it down to natural thinning due to age, but it isn't thinnning, it's total loss in the areas affected. When I had the intralace fitted, she was very impressed and admitted the 'thinning' was a bit extreme!
Other people (apart from the ones I chose to tell) made comments about a new haircut or colour, and that I looked younger, but no one has ever said anything about partial baldness or anything.
It's all such a journey - and a difficult one that everyone has to find their own way through. I am so very relieved to have found my way, but it isn't everyone's and if someone had told me two years ago that there was a medical cure, I would have gone for it like a shot.
My concern now is that if it was chemicals in the form of sunscreen that caused this - then are yet more chemicals the answer? And if it was sunscreen, what about the next generation who are using it far, far more than mine ever did?
Long post - sorry!
Denise
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Hi, I was diagnosed in April but noticed in December that my eyebrows went away. I think I have lost hair for at least a year before without understanding the reason. Thought it was the age, I am soon 65. Now I have tatooed the eyebrows and no one can see that they are false. I had a 3D blading tecnique which makes it look quite natural. I feel so much better since this was done a month ago.
I now try Rogaine and I am on medication with antiinflammatory new drug Otezla. It is too early to report the results after have been on the medication just a month. In May I lost a lot of hair in the front but the last two weeks I have hardly lost any hair at all. But too early to know if it is permanent or just a period. We need to test and comment about our experiences as our doctors still don't can give us a cure that have guaranted effect.
I am happy to read comments from others. I know so much more today than just two months ago, thanks to this FFA- group. -
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Tinsel, I have no side effects from Otezla. The first two weeks I could feel that my stomage reacted a bit but not much. Now I don' t react. I feel good! Stomage reaction is a common effect when you start this medication but my doctor said that it will be over and she was right. I am so happy that I have the opportunity to test this expensive drug. It can only be prescribed from Dermatologists. My GP at first just said that I would have to live with the hair loss, itching and no eyebrows. But he referred me to the Derm and that was my luck. I am not so concerned anymore as I have learnt so much about my diagnosis through this forum and I now know what could worth trying. For me a strict Paleo diet would not work. I think it is important to accept the diagnose and try what you think can help. Healthy diet, physical activity, no sunscreen, tatooing eyebrows was my way. We have to enjoy life although we sometimes feel sadness from our FFA.
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There is a medical study that shows that sunscreen might be a factor. I have found it when googling and maybe also in one of the links in this forum. The article was published in Jama Dermatology. The study compared women who had used sunscreen to women who had not. Some more of those who used sunscreen had been diagnosed with FFA. But the study was a to small group to be an evidence. But to serious to make a suspicion of connection between sunscreen and FFA so the medical science paper was published.
If you read the report from the 2016 Carf conference in this forum the doctors recommended to avoid sunscreen and instead use a wide hat. Read what SJC reports, she was attending the conference in New Orleans in the beginning of this month. When doctors specialised in FFA thinks that moisturers and sunscreen can be a risk I think it is better to protect from sun with a hat. The last three years I always used sunscreen and maybe it could be a link with my FFA. -
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I don't know whether sunscreen should be avoided on the whole body. But the theory is that the chemicals in sunscreen and some facial moistures goes into your skin and absorbes. I think that is the reason why the doctors in the Carf conference recommend avoiding sunscreen in the face and instead use a wide hat. I think it is easy to protect the body with leggings and a blouse. I sometimes wear longsleeve shirts. In my country, Sweden, our sun is not so dangerous as in California. We have just the period from May to August when you need to protect from the sun.
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Have a nice trip and enjoy the fjords in Norway. It is so beautiful landscape. Hope you also enjoy Sweden. You arrive when the holiday period starts from midsummer. I know that tourists visiting Stockholm at that time wonder where are all people. The answer is that they are in their cottages. Also the norwegians spend much time in their cottages in the mountains.
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