Debs - thank you very much for all of that info.  You must have had an exhausting day, what with getting there, listening to all of that - on a subject that is so emotive and making such comprehensive notes too. VERY much appreciated.  The epidemic statement is a rather shocking and reminds me of the first stages of internet research I did before, in desperation to find others similarly afflicted, I started this forum on Alopecia World.  I refer to that early Daily Mail article which reported that FFA was 'the new epidemic among women' .  For those of you who haven't read the article - it is easy to find and I found it so compelling that I contacted 2 key professionals interested in FFA, namely Dr Harries and Carol Michaelides. When I saw Dr Harries recently I tentatively suggested that he lets his patients know of our forum which they may derive some comfort and support from.  So - lots to think about, Debs, following on from your notes. Thanks again ! X 

Debs - all that information is amazing.  Thank you for taking such exhaustive notes. 

I was interested in the fact that Dr Tziotzios actually said FFA was 'an epidemic' in UK.  I've thought for years that it was under reported because I kept seeing ladies with the same hair loss pattern as I had and wondering what treatment, if any, they were having.

I will certainly take part in Dr Tziotzios' research project.

Thank you again for the info.

Thanks Celia, it was actually a very uplifting morning, I came away with more info that I had imagined and although not a cure there are at least a few more things we can try out if we feel inclined.  Putting my feet up now and having a night just relaxing in front of the TV

Betty I suggest you contact CARF they are based in the USA and can direct you to a derm with a special interest in FFA.  Yes, you should do something preventative now before the inflammation continues - the sooner the better.  When the condition burns out the doctors don't know if it is the meds or if it would have stopped anyway, however since scarring alopcia is permenant hair loss I think most of us want to try and take some action whether that is diet, drugs, supplements etc..  Please do contact the doctor I have put in my post doing research, I don't see why he would only want DNA from people in the UK.

MICRONEEDLE ROLLERS - only heard about them yesterday at CARF meeting.  have looked online and increase effectivness of minoxidil (regaine/rogaine) by 5 times efficiacy and if used on its own has proven to stimulate collegen production and hair growth.  Suitable to use on own or with any topical applications.  Very cheap online to purchase.

....there you go - I knew there was something in my Chinese head whacking!!!  Lets hope that the supplements he's given me for my gut are also productive.  Watch this space (although he said that it would be a long job).

Jean

x 

I agree with you Jean, I thought of your post about your Chinese medical practitioner yesterday when the derms talked about the microneedle rollers.  I have just ordered one online for £25.  Am going to also buy some regaine now and use together. 

Wow! Thank you Debs so much for sharing all of that information! So helpful and it is nice to know that there is research going on and that maybe there is some hope. I would definitely like to be a part of the research. I will email Dr. Tziotzios! Thank you again and please keep us posted on the microneedle rollers.

That is a great question, Jules! It would be very interesting to know if baldness is increasing in men! I have long wondered about cosmetics, creams, lotions, sunscreens (definitely something that generations before us have not used on their faces and bodies like we do, since they didn't really know that much about sun damage), and pesticides too! All things that are part of our environment these days. I agree, organic is definitely the way to go whenever possible. 

Please can you let me know where you purchased the Regaine Terry?  I haven't tried this yet but my existing hair is significantly thinner than it used to be so it's worth a shot.

Many thanks

Ladies, especially Debs, thank you so much for all of this wonderful information.  I have been copying much of the information to a file I am keeping on my computer.  I will print some of this out and take it to my dermatologist this week.  It will be interesting to see what she has to say.  

I am somewhat new to this forum.  How I wish I had known some of this information a few years ago.  I might have been able to save some hair if I had been armed with information.  I was diagnosed with FFA in April of this year, when a dermatologist biopsied my scalp.  He was the third dermatologist that I visited after I lost all of my eyebrows and noticed my hairline was receding.  I had actually gone to one dermatologist when my scalp was inflamed, red, and looked as if I had an open wound.  He said I had some sort of allergy and gave me a topical ointment.  I noticed my hair fell out when the inflammation healed.  Then, I notice my scalp was smooth in that area.  Right after that, my eyebrows fell out.  I am not a doctor, but even I knew that I had scar tissue and that no hair was growing where the scar tissue existed.  I knew then that I never would grow hair in those places again.  Each doctor I saw dismissed my hair loss, and my internist asked me if I was plucking my brows too much when I asked her about the sudden demise of my eyebrows!  

When I was finally diagnosed, I was told that nothing could be done. 

Again, thank you for all of you who share so much about this condition.  I feel encouraged and less alone.  This diagnosis has been devastating to me.  At times, I think that I should not be so shallow about such a loss as hair, but my hair has always been a very large part of my identity.  You have no idea how much it means to me to know I am not alone in this journey.  

As I understand it, once I start Rogaine, there is shedding for some weeks.  Who amongst us can afford this.  Then, once we start this regime, one must continue nightly for the rest of our life as I see it or everything we gain (if we do), will shed. It's a huge commitment and even if we use the foam instead of solution, I would imagine one has to wash their hair daily due to having used the foam. Sorry to be a downer, just trying to analyse whether to start the Rogaine path but then if I don't, wondering how bad will my hair loss be.  Has anyone else struggled with this dilemma? 

Hi Rita - I used minoxidil for about 4 months once.  It did not work for me but I know others have had some success with it.  My worry about it is that, yes, you must continue forever or the newly energised hair will gradually disappear.  At the moment being on hydroxychloroquine and lymecycline, and using clobetasol, I am loath to put chemicals on my head as well as in my tummy.  Maybe I will change my mind, but I remember the regime before going to bed at night.  I found it deeply depressing and seemed to take forever.  But we must all make our own decisions.  Like you - sorry to be down on this idea.  I wish everyone using minoxidil/rogaine success with it - perhaps I will join you. x

Hi All, I haven't been on this site since Friday, and have had a lot to catch up on.  Regarding the roller with the use of Rogaine, I read some information about this several months ago.  It is my understanding that the roller causes tiny holes in the scalp that allow the Rogaine to get into your blood stream.  The article (written by a doctor) that I read online said Rogaine is meant to a topical treatment only and should not be used in this manner.  I wish I could remember where I found this article, but at this point I have read more information than I could possibly remember.

I appreciate the information on Ragaine.  I'm not so sure I want to even think about the side effects, so I doubt I will try it.  Carol, I agree with you on this being a balancing act between hair and health.  At this point in time, I'll take health over hair.  I already fight problems with arrhythmia and racing heart.  I don't need to add to that.

Hi Sally. I agree with you about health vs hair. We are all in a very difficult situation. If we choose the medication route, or not, we can never be sure if we are doing the right thing either way. As this condition is not life threatening I have choosen not to take any medication. If in the future I am offered a medication that has proven results I may chose to take it then. I would like to share a couple of photos with you. One taken 3 months ago and one taken yesterday. Both are of the same side of my head.

You can see my original hairline by the whispy bits at the bottom of the picture.

I definitely have more hair growth down towards my old hairline.

My hairloss has slowed down ans some has even grown. It shows the unpredictability of this condition with and in this case without medication.

xx

Thank you, Liz for sending these photos.  How exciting to see the new hair growth!  I would be thrilled.  What are you using?  

Hi Liz,

Thank you for posting these pics. My hairline looks like your old hairline except I have lost mostly on the sides and above the ears. I hope and pray that I get back some of the lost hair. I am not on any meds since the steroid injection has caused the largest loss of all of my sheds.

Jen.

Wow, Liz, that's unbelievable!  I'm so excited for you. 

Carol, my eyelashes have also gotten longer & thicker since I started using Rogaine 6 months ago.  I use the generic 5% foam version every morning on my entire scalp & on my eyebrows.  I 'm able to pick up a 4-month supply at Sam's Club in the US for $32.95.  I don't know if the foam version is available online due to the aerosol can it's packaged in.

Thanks Carol, yes the Rogaine on the Amazon site, haven't checked Walmart as yet, is the best price yet.  Now to decide whether to use it. Yikes, didn't realize such side effects.  I am on a blood pressure medication so will need to consider that too.  Did you personally have shedding on start up and if so, how long did it last?

I'm not using any medication. When I was first diagnosed in September 2012 I was prescribed prednisolone and Doxycycline. I took prednisolone for 6 weeks (which was the whole amount I had been prescribed) and the Doxycycline for about 3 weeks (I stopped due to re currant thrush and concern how it might affect my health long term). I tried Rogaine in April which was prescribed by my derm bit I had to stop using it after a few days because it made my eyes burn and I had a permanent headache whilst using it.

For me, the best way forward is to try to limit the stress in my life. Easier said than done!I have changed recently changed one of the jobs I had which had caused me a lot of stress and I am making more of an effort to sort the things out in my life that are causing me stress rather than just letting them fester under the surface. I continually tell myself that doing my best is good enough rather than feeling that my best is not good enough. I am also trying to listen to my body more. I know that I feel bloated if I drink milk and eat bread so rather than accepting that I feel bloated I have cut down on these foods. I have some way to go with that but small steps.

I'm also one of those people who appears laid back to other people but I tend to worry a lot about things that haven't actually happened. I'm trying to work on stopping myself doing that!

I'm feeling lucky at the moment. My youngest  struggled at school. Quite often he would skip lessons and he hated going in. In September he started college and he loves it. He was choosen to represent is college at the skills show at Birmingham NEC. This has made me feel so happy and I know that I'm feeling less worried for him and so maybe that is what is helping my stress levels.

The one other thing I am doing which I think may be helping is to massage my head several times a day. If I am sat down watching tv I gently massage all around the front and temples. It was when I was doing this that after a few weeks I felt bristly bits of hair around my temples. It might work, it might not. But it does help me to de stress.

xx

www.ukdermarollers.co.uk

I have ordered my microneedle roller from this site.  I have the 0.5mm needles.  There was a study on males with alopecia that used needles of 1.5mm needles, another study in Australia used 0.75mm needles, however manufacturers advise less length for females.  The 0.5mm needle length if recommended for use on ladies scalps on this website and seems to be a length that females use when needling their faces to apply anti-aging creams.  Needling is not done every day.  2/3 times a week because the skin must have time to heal and for collegen to be produced.  So I will be only using topical treatments 2/3 times a week.  I can of course just needle and not use any topicals because the action of slight injury to the skin on its own is effective.  I have already experienced this from having my tattoing on eyebrows/eyelash enhancements.  This is just another tool for us all and a tool that we can use without drugs if we want to avoid any more medications.  I have bought a numbing cream just in case it hurts!!!

Hi. Can I ask you all if any of you suffer from Keratosis pilaris.? It's a condition where the skin on the back of your arms and tops of legs looks a bit like chicken skin and where the skin feels rough, like sandpaper. Please use google images for pictures. Both me and my mum had it throughout our childhood and young adulthood. I have read that it is caused by an over production of Keratin and it can affect the follicles of the eyebrow hairs. It would be interesting to know if any of you have it as I wonder if it is somehow related to this condition.

Liz,  I've also had little pink bumps on the backs of my arms since I was a teenager.  I've never been concerned enough about it to consult a doctor.  The funny thing is that after reading your post I felt the back of my arms only to find that they are now completely smooth. 

Debs, I have a question for you if you don't mind.  Please forgive me if I'm asking something you've already answered.  Should the Dermaroller be used on the bare spots and where the ffa is active?  I'm concerned that this might cause a flareup. 

I have a phone call set up with Dr. Tziotizios this coming Thursday afternoon (a bit harder to coordinate with me being in the US).  I just wanted to say thank you to Debs again for getting all of this information to us! I am looking forward to it. I have never had Keratosis Polaris, nor has anyone in my family that I know of. 

Also, Annie, I have been wondering that same thing about those rollers. It makes sense to stimulate the scalp, but, then again, I think my hair loss started up again after my biopsy, so I don't know. It is so hard to tell with this stuff!

Thanks debs for gathering all that information. I've contacted Dr Tziotzios and will be giving a sample. Its not going to help me but I felt better today knowing that some research is starting and that people may benefit in the future. I'm confused about what the rollers are for. Never heard of this before. Take care

I've also contacted Dr. Tziotzios and will speak to him on Thursday.  I agree with Dee that it's nice to be able to do something to help research into FFA to benefit people in the future.

Liz - it's great that you've had some regrowth - long may it continue and I think you could be right about stress.  

Stress certainly could have been a factor for me (my hair loss began at the time when I was helping care for my mother who had dementia).   I'm not on any medication now except for Dermovate which I use only when I get a flare up.  The dermatologist I was seeing earlier this year told me that the hydroxychloroquine hadn't worked for me and the only other medications available carried the risk of side effects - which I don't want. ( I suspect she felt my age was a factor too).  Anyway I'm going to do the stress reducing bit like you, Liz, get on with my life, hope the FFA burns itself out and be glad it is nothing worse!  At least I've got my nice hair-pieces which have really boosted my morale.

All of you ladies who are trying the treatments - I'm rooting for you!.  It's only a matter of time before the doctors find a cure so hang in there.

I had a long talk with Dr T yesterday, and am going to be taking part in his research. I am so delighted that more research is being done into this awful condition.

It is great that Liz has experienced some hair regrowth, it really does give us some hope! I feel full of drugs at the moment, and don`t know where or when it will end!

I`d love to know more about your hairpieces Kath, as I got one yesterday but when I wore it home my husband said it was appallling, and you could see the contrast between my own hair and the top piece so clearly it was obviously fake, and it looked too top heavy as well! At least he is honest, which is a good thing!! Do your pieces clip in, or are they taped on? Are they synthetic or real hair? I know it would give me more confidence if I could find a good one that just covers my front and sides, and feels lighter to wear than a full wig.

Hi Jules. I have not had a biopsy. I lost a lot of hair very quickly, within 1 year I had lost several inches. My mum has had this condition for about 7 years and has lost about 4 inches. She has never used any medication. I have male pattern thinning of my hair as well and I think at some point my shedding took place very quickly ( I cant remember the name for this). I think that the hair that has grown back is maybe the hair that shed quickly, maybe? 

xx

Rita, I'm sorry I haven't  replied to your questions regarding Rogaine sooner.  I have been using a generic 5% foam version for over six months now - morning & night for the first 6 weeks, then every morning since then per my doctor's instructions.  I wash my hair every other day.  I put the foam on my wet scalp on the mornings I wash my hair, then style as usual.  It actually gives my hair a little lift at the roots, and my hair looks as clean & shiny as usual.  It does make my hair a little duller on the second day.  I've found that if I spritz my hair with a little leave-in conditioner on those days & use my blow dryer with a brush designed to increase shine (Name brand:  Ion - purchased at Sally's Beauty Supply in the US) for a minute or so, it brings back some of the shine.  As far as shedding when you start using Rogaine, yes, I did experience some.  This is supposed to be a good sign that it's working by stimulating the hair follicles to push out dormant hairs.  I noticed about twice my normal shed about two weeks after I started using Rogaine.  This continued for about two weeks and slowly tapered off and went back to my normal ffa shed by week six.  The initial shedding was scary, but I really didn't notice that my hair was thinner after my Rogaine shed.  I started sprouting new hairs in less than two weeks, and I can still see little tiny new hairs coming in.  Good luck to you if you decide to use the Rogaine. 

MICRONEEDLE ROLLERS.. it is known that when there is slight injury to the skin it encourages hair growth, so often people that have eyebrows tattoed (regardless of whether they are doing it for fashion and don't have alopecia or if they are alopecians) more hair grows in that area.  So, by using this tool we are trying to trigger this effect.  It also encourages more collegen production so it is anti-aging!!  Angelina Jolie does it on her face.  You can use it on bald areas with the hope that something might grow back there is no harm in doing that and use it on areas where there is still hair to encourage more hair to grow and preserve what we still have.  this tool just encourages hair growth.  So use it on bald areas and areas of hair.  I use mine on my face for anti-aging and my scalp for hair loss.  Use 2/3 times are week so skin has chance to repair itself.  You use your anti-aging creams on face after needling to boost effectivness.  You use your regaine or dermovate after needling to boost effectiveness.  OR you can just needle without any lotions/creams and it still works.  This is a tool we can use on its own or in conjunction with other treatments.  It is not a new treatment, Chinese medicine has used this effect for 1000s of years.

I have a low pain threshold but I can handle using this tool.  I was very pleased with the effect when I used it for the first time on tuesday, my skin went all pink and the blood flow increased in that area for a few hours afterwards.  I could also see/feel that my face cream was working much better when I applied it.  You can needle any part of your body but not eyelids.  

Ladies, this is a great tool to use for our faces... it has the added bonus it may also help to preserve our hair and encourage some regrowth. 

I looked at some reviews of needle rollers on the Internet, and there are also some warnings. Some people have suffered from damaged skin which has left permanent marking. Maybe it was incorrect use - but its as well to be aware of the possibility!

Re wigs. This is to let you all know my recent positive experience. I've just visited Wills Wigs, near Birmingham, and been fitted with a fabulous Ellen Wille wig in "Flame mix" that closely matches my own hair colour (which is coloured red) I had a NHS voucher so only had to pay £65 towards the cost. I knew as soon as I put it on it was right for me;  the change in my appearance was amazing. I had been feeling really depressed, hiding away at home, and only going out with a hat on as I felt old and unattractive with my hairline receeded and my hair so thin on top. My skin is very good but because of my hair issues I felt older than my age.  Anyway, I thought I have to pluck up the courage to wear this wig in public so go for it girl!  I was to attend a study day at work, so wearing  my own clothes for a change - normally I wear "scrubs" for work which makes me look like a sack of potatoes and no make up because it is too hot  - I put all my make up on and the wig. Felt VERY nervous but I needn't have worried - the response was fantastic. Everyone said I looked amazing! One person I hadn't seen for a few months didn't even recognise me and then she asked me where I got my hair done! Wow! I ducked out of answering but it felt so good! I'll be changing my photo soon to reflect new me.

Annie, Thanks a bunch for your Rogaine routine info.  I was at Costco-U.S. yesterday and saw the Rogaine 4 mths $49. and the no name 6 mths for $48.  I probably would stick with the Rogaine brand if I decide to try it.  I assume you had no side effects then, correct?

Rita,  I had a tender, itchy scalp for about the first 3 weeks after I started using Rogaine.  My hairdresser said this was normal as your body gets adjusted.  I have a very sensitive scalp, but it wasn't anything too bothersome.  I also find that I'm a little furrier in places I don't use Rogaine, like my neck & around next to my face.  The good news is that my eyelashes have gotten thicker & longer.  Hopefully it draws attention from my thinning hairline.

Caro UK, I'm glad your new wig is such a success.  Thanks for sharing with us.  I'm a very private person, and my hope is that if/when the time comes for me to transition into a wig everyone will think it's my own hair, only better.