I really believe this is stress related.  Every time i have been under extreme emotional or physical stress my temples have receded and my hair has thinned.  It always grew back but not as thick.  Since i had surgically induced menopause in 1998 its gotten worse.  I also developed horrible allergies in 1992.  Thats when my doctor thinks i developed lupus.  Its a puzzle.

I have just looked into          Treatment for FFA    on the internet  - there was an interesting youtube video (8 mins) that may be worth watching - (cancel the ad at the beginning !)   

Hi Mandy - just type in  Treatment for FFA, it is the 5th article and there is a box on it with blue writing on - FFA - hope you find it. x

I agree that the severity of this disease is stress-related.  My scalp was calm at my July visit with my doctor, then a death in the family caused a painful flareup in early September.  My scalp is just beginning to calm down two months later.  All the drugs in the world can't combat stress, but my doctor did say that he thought the flareup would have been much worse if I hadn't been taking Plaquenil.  He also told me to call him immediately if I have another flareup so he could prescribe short term steroids to shorten the severity and duration.

Ooooooops - blond moment ! http://youtu.be/0lLeXr9J93Q   this is the link and it's about reversing your autoimmune disorder......... x

Polly, you went through an awful time with a combination of events and serious ill health on top of it all. As you rightly say, the stress you suffered during those years seems likely to have been the trigger for developing FFA.  Thank you for sharing this with us. I'm glad you've been able to come out of that dark period in your life and enjoy life once again. This disease definitely seems to be related to stress, and also linked with ill health when the immune system becomes damaged.

Some years ago I developed IBS and was prescribed medication to alleviate the symptoms.  At the time my GP did not give me any dietary advice but I am definitely gluten intolerant as I have a flare up if I eat anything containing gluten. If I pay attention to my diet I do not need to take any medication.

Hello Everyone,   I saw a new dermatologist last night.  Thankfully, she trained with an expert on scarring alopecia, so she was extremely informative.  However, she told me after looking at my scalp that I have both FFA and LPP.  Of course I do.  Doesn't that beat all!   I explained that in September my scalp became extremely inflamed and when it finally calmed down I had lost patches of hair.  She told me to call her immediately if that happens again so that she can do injections to reduce the inflammation as quickly as possible. 

So, I just restarted hydroxychloroquine, she gave me injections last night, and I continue to use clobetasol solution and shampoo.

I am attending a seminar on Sunday.  Will let you all know if I learn any more than we already know.

ann

Hi All,

I'm wondering if anyone has had the same experience as I'm having.  I was having trouble with Clobetesol irritating my scalp, so my doctor switched me to Bethamethasone topical 2 times daily.  I have been using it for three weeks, and the redness on my scalp has almost completely disappeared.  I don't know if it's the new topical that made the difference or if the plaquenil I've been taking for 4 months is finally starting to work.  My problem is that even though my scalp looks much better, it's still very tender when I style my hair or the wind blows it around.  I guess I expected that when I got the redness under control, the pain would subside.   Can anyone tell me at what point my scalp should stop being painful? 

Hi All!  I watched the Youtube video about autoimmune disorders and digestive issues - leaky gut syndrome.  I have been diagnosed with IBS and have had pretty bad digestive issues for some time.  I have been toying with changing my diet, but haven't done it yet because it seems too difficult right now since I have a husband and 3 kids.  Preparing separate meals for myself always seemed a bit daunting.  However, after doing some research on "leaky gut", I think I am going to give my diet a much needed overhaul.  I just read the book "Digestive Health with REAL Food" by Agalee Jacob.  It does an amazing job of explaining all sorts of digestive issues and the link with autoimmune disorders.  So, here we go.  Will let you know how it goes.  It would be nice to feel better and help both my issues - digestive and FFA.  I'll keep you posted. 

Does anyone know if it is okay to have flu injection I usually have it every year but I'm worried it may compromise my immune system? I wondered if anyone has mentioned to their derm. as I did read something a long time ago regarding side effects?! best wished Sammi

I have had pneumonia in the past. so always get a flu shot.  My thinking is that I'd rather give my immune something "real" to fight, instead of my hair. 

I think the triggers for this disease are different for everyone. For me, the flu shot always makes me have a big hair shed. I had Influenza, BAD, in 2006...and afterwards, started to notice a bit of thinning around my temples. The next year, I decided to get my first flu shot (2007), and that was my first MAJOR hair shed...lost most of the hair from my right temple. Then, nothing for a year. The following year, 2008, got another flu shot and lost most of the hair from my left temple area and the rest of my right...then nothing for the rest of that year. I got one final flu shot in 2009, and that is when I started noticing a lot of thinning around the top of my hairline. I have not had a flu shot since on the recommendation of my endocrinologist. She believes that is my trigger...or, at least, one of them. I am going to see an immunologist in a few weeks to discuss this with him...and also to find out about the Shingles vaccine. I'd like to get it, but am so scared that I will have no hair left.  Ugh. Again, I think this all varies from person to person though.

I saw Dr Harries last week, who prescribed doxycycline antibiotic for me, two tablets twice a day, as well as keeping on taking the Hydroxychloroquine, plus Dermovate scalp solution, as it is stronger than the Synalar gel which I have previously been using. Feel fairly depressed that I am just taking more and more drugs, and the hair loss doesn`t seem to have improved at all. Now I am scared that if I stop them it could get worse!

Interestingly I also went to see a trichologist locally in Evesham, Sally-Anne Tarver, who says she is seeing more and more patients with this condition - she says that she reckons it is far more common than people think. We also discussed the possibility of laser hair treatment for this condition -  it could perhaps be a suitable topical treatment - has anyone had any experience of this?

Pam, I am seeing Dr Harries and I am using exactly the same drugs as you.  I am taking both the doxycycline and hydroxy for 6 months then have to go back to be reassessed.

Flu jab - I did ask about this.  I was told that it is OK to have a flu jab with these drugs.... BUT I have decided I am not going to have the flu jab because I don't want to stimulate my immune system as it is in overdrive already.  I am also not going to renew other vaccinations when they lapse ... I will have a few essentials but the ones I keep up to date in case I travel to tropical destinations I will not renew.   For the past 20 years I have kept all my vaccinations up to date and this has been everything; yellow fever, typhoid, diptheria, hepatitus etc.. so I think my immune systems needs a rest especially  now I am autoimmune.

Welcome to newcomer Betty.  Sorry you have FFA, but we hope you will find this forum helpful to you.  I wonder what your story is, I couldn't find you anywhere - I hope you're able to navigate this - it isn't difficult and if you read back ( there's loads !) there is a lot of information that might be of use to you.  Best wishes.

CARF MEETING

3 dermatologists attended

Dr Christos Tziotzios is doing a research project and needs our DNA.   He will send you a kit to your home for a saliva sample. Please email him for kit christos.tziotzios@kcl.ac.uk

He said that FFA is now an epidemic in the UK. 

Aim of treatment: 1 stop inflammation

                              2 control disease activity

Drugs:

Antibiotics; doxycycline, ciprofloxacin, rifampicin, lymecycline

Steroids; scalp injections, oral - prednisolone, topical - dermovate, etrivex shampoo

Hydroxychloroquine sulphate

Roaccutane - usually used on acne but can be used on scarring alopecias if pustular 

Minoxidil - regaine/rogaine.  increases blood supply and shifts hair into a growth phase.  Foam is best causes less irritation.  Must use every day for 6 months to see a difference.  

Pioglitazones; diabetic drug, used in USA for lichen planopilaris.  Slight risk of bladder cancer

Laser - LLLT low level laser therapy.  6 - 9 months to see a result. Activates hair growth stage.  Not on NHS.  One woman at meeting uses a helmet 25 mins every other day.  Make is IGROW you can buy on internet.

PRP platelet rich plasma - already in use for other alopecias.  Derms said think it would work for FFA.  You take some of your blood, remove plasma, inject the plasma into scalp.

Food: derms agreed that sugary  foods promoted inflammation in their acne patients and did think the diet plays a part however the medical profession has not carried out any studies on diet!  Sugar, dairy and alcohol we things many of the ladies knew from experience to trigger inflammation.

Cloning techniques

www.replicel.com see carf website there is a link to a video

www.histogen.com

Microneedle rollers - concept that slight injury promotes hair growth.  Already proven as areas that are tattooed often retain/regrow hair. Nanogen company are retailing this product n 2014.

Hair simulation tattoo - short strokes representing hair that can fill in gaps and create an illusion of hair density. www.looklikeme.com live in 2014 will give details of tattooing for aloecpia.

Hair transplants - when this is done with FFA it can trigger the FFA to reactivite, so not recommended.

Causes: genetic predispositon plus environmental factors. 

Lots of research is going on.

Although there are no new drugs to try some of us might want to look at the microneedle rollers, laser helmet, PRP.

Again ladies please do contact Dr Tziotzios and donate saliva for his DNA research.

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.