I wonder ?  I have always felt my FFA was triggered by an illness - severe double pneumonia from which it was touch and go for a while - I had a lot of anti-biotics and X rays and took many months to recover - after this my hair began falling out steadily and I was told it was because of being so ill and having lost so much weight. Then 10 months later the inflammation began followed by The Diagnosis.  Can anyone recommend any particular probiotic ? Thanks.  Is there anyone else who feels that medications have triggered their FFA ?

Rita - what is it called ?  Anybody else recommend one ?

Yes I have also taken antibiotics for re-occurring urinary track infections. When I have also had an allergy flare up it has always been after a virus or infection.

Interesting.

Hi all

Like Claire I had several courses of antibiotics for urinary track and kidney infections. Thanks for the advice on Ultimate Flora, will give it a go, nothing to lose.

Hi all, it sounds like several of us have had infections that have resulted in a course of antibiotics.  I've always thought maybe my severe ear infection might have triggered the ffa, but now I'm questioning the antibiotics.  Antibiotics have been widely used for more than 70 years, and ffa is a relatively new disease.  Is it possible that another drug in combination with the antibiotics plays a role? 

Hi Debs - I have thought for a while that the trigger for FFA is not the same for everybody otherwise it would have been very easy to spot.  The same is the case for other auto-immune diseases - rheumatoid arthritis isn't triggered by a specific set of circumstances for example.   Do you recall when we were reading that it was felt that this disease was generally seen in  post-menopausal women............not the case.   However I also think that the idea of identifying a common factor might be a possibility.  I agree that a couple of 'questionnaires/surveys' have been blunt  instruments  to be able to pinpoint anything worthwhile in terms of finding the cause. I am still off all meds apart from clobetasol. It's 5 weeks now since I saw a new derm - no results from blood tests that were to take a week - the thought was that there may be a reason for this that could be found from blood tests.....tried calling, cannot get through........

Good morning ladies.  I have posted on Anne's discussion re the use of anti-biotics.  I know there are many of you who read but don't post very often, but if you have a story to add on Anne's page then it could be useful.  Thanks !

April -there are several ladies who have suffered with FFA for many years.  My understanding is that - whilst FFA may appear to 'burn out' - the condition is liable to start up again depending upon several factors.

This is great news for you about your treatment ! Are you still having hair loss generally - away from the scarred area ?

Someone posted several weeks ago that her derm had declared that her FFA had stopped, but I can't recall who that was ! Sorry !

Regarding the 2 year timescale your derm said he had read about, I guess he will have also said that the hairloss pre-burntout can measure many centimetres.

April, if your treatment is working and your hair loss is diminishing - DON'T get stressed out about the reduction in treatments.  Go with it.

The very fact that your derm has to refer to the findings of some literature underlines the reality that that this condition is really little understood and actually rarely encountered by the majority of dermatologists.

Keep us posted !

Hi everyone

A really interesting discussion - I've thought for ages that an over-active immune system is somehow at the route of FFA.  I have a damaged bile duct which leaks bile into my gut (liver, kidneys etc) and this stimulates the need for my immune system to work overtime.  I'm hoping to see a specialist at Kings College Hospital very soon with a view to repairing my bile duct.  I'll obviously report back if my improved gut leads to a calming down of my immune system and ultimately remission in FFA. psoriasis and arthritis.

Watch this space!!

Hi Ladies, I saw my derm last week and my FFA is very active.  The inflammation extends almost to the crown of my head.  She did several injections and recommended i get them every four weeks.  I think i'm going to stop using rogaine and continue with clobetasol, doxy, and plaquenil.  Getting eyebrows tattooed on April 29.  Excited!

Hi all, just catching up on the latest posts.  April, I'm excited to hear that your laser treatments are working.  I think we would all love to try a drug-free approach to treating ffa.

I just returned from my 3-month check up with my derm.  I have been taking Plaquenil for 9 months now, as well as using a 5% Betamethasone topical.  The doctor was fairly pleased.  He was hoping that the ffa would no longer be active at this point, but there are a couple small stubborn areas that are still active.  I see him again in six months unless I experience a flareup.

I have just noticed in the last month or so that I'm not shedding quite as much.   The pain has gradually lessened since I started the Plaquenil/topical regimin, but it's still quite painful whenever the wind blows hard.  The doctor said that it can take years for this kind of pain to go away, and sometimes it doesn't.  The good news is that it doesn't mean that my treatment isn't working.  

Hi ladies!  Debs, the laser is xtrac laser.  From what I understand it is pure UVB light and the wavelength is 308nm.  I get it done at my derm's office and my insurance covers it.  However, there are places that will do it without a script from your doc and you have to pay out of pocket. It is somewhat pricey I think.  Mostly this is used for psoriasis, but my doctor says it also clears lichen planus, so I think what he is doing with me is mainly an experiment to see if it will work for FFA.  I will say that the results have been very good, but it took a while to see them.  I have been getting the treatments for 7-8 months.  I don't want to give anyone false hopes as I don't think this has completely arrested the hair loss.  However it slowed down a lot, almost not noticeable unless I compare to where I was a year ago.  Ugh, I don't know, I was doing so well for several months not thinking about this really at all.  I've been stressed recently because we just bought a house, and moved, and I'm applying for jobs and going on interviews.  Anyhow, been feeling like my hairloss is getting me down, and I keep looking at my eyebrows and eyelashes thinking they look thin, then the next minute I think they look ok.  I still have hope, I definitely do, but also trying to come to terms with the fact that this may never go away completely.  Anyone have any tips and how to not be so stressed out about this??  Also, any good ideas for covering up hair loss.  My hair is very big, curly, frizzy and wild.  I don't know how a hairpiece would ever blend in with that!  Thanks for listening: )  So grateful for you all

Anne - good luck and a steady hand to the artist ! You will be fine and very glad you had it done.  Pencilling in eyebrows can only work for a short while I think.  I had mine done 17 months ago and need to go for a top up soon I think - I will go after Easter hopefully and maybe catch up with you Deb at the same time.

I do think having the support of others in the same boat is so important.  I know that on this site people come and go, probably having decided they no longer need it.  We have had, as you can see, 145 people who have used this group, but I guess probably only about 30 now communicate and sadly there are more folk joining us.  Not a good thing to have, this FFA !  Hope your day is good. x

Hello to all, I haven't been on here as much lately, but do still follow along. Anne - I hope your new eyebrows come out well and it helps to boost your confidence. I know I hate looking into the mirror and seeing how bad my hair looks, and always trying to cover it up. I've never met another woman with FFA so I don't really have anyone around who understands. I don't know if my Dermatologist would be able to share that information. April made the comment about her hair being big, curly and wild, and I too have curly hair that would make it hard to match a hairpiece to. I just style it with long bangs and use lots of hair spray, but when outside in wind I usually wear a hat. I also wear stretchy material headbands that I wear under my hair, hiding my hairline and it covers my forehead and temples, with the bangs falling over the front of the headband, and my hair is about shoulder length right now. This helps also when outside or just going in and out of stores, since the wind always wants to pick up my hair and blow it all around. I wonder what else people do to hide their hair loss. Thank goodness I live a fairly casual life style, because the headbands give me kind of a bohemian look, and not very professional. I'm a stay at home mom with two sons so it works for me. I'd love to hear how others cope with this.

While in Target the other day, I noticed quite a wide hair band made of plastic and covered with material and wonder whether it would slide back and forth but I am going to pick one up and hopefully it will stay in place and cover the frontal area.  It does not go under the back of head but merely over the top of head to the top of your ears.

Rita, I've tried the plastic headbands but they don't sit right on my head and since I wear glasses, it just gave me a headache. You could also wear the fabric headbands more on top of your head, holding down your bangs if you have them. This doesn't look so good on me since my bangs are rather thin. I pull some of the back of my hair out from under the headband so it sits more smoothly and all you see is the front of it. I can also put my hair in a ponytail and wear the headband across the front for a cooler sporty look. I just heard about a website that sells headbands made from a swimsuit like material that look nice called Bolder bands - bbolder.com - but have not tried them. Look like they would be good for sports or swimming too.

This will be OK Anne.  But I / we understand your total disappointment.  Having geared up to have a cancellation is awful.  Fingers crossed for the 30th ! x

KarenGinny - I was interested in your use of headbands because I still use them sometimes and have found my fringe (bangs) is now a bit thin.   My hair is quite fine and straight so wearing the band over the fringe doesn't look all that good.  I've been experimenting with a strip cut off an old hairpiece which I've sewed on  to one of my headbands so it acts like a false fringe.  I'm actually quite pleased with the result so now I'm going to try to make a detachable fringe with velcro that I could use with different scarves and headbands.  It may not work but I feel it's worth a try.  (And keeps me busy!).

You wrote that your hair is very curly and you felt that a hairpiece wouldn't work for you but from what I've now seen of the variety of wigs around, I'd guess that you could get a hairpiece to match your hair.  You could perhaps go along to a good shop and ask for advice - I've found that the girls who work at my wig shop are really positive and very helpful.

Like you, I don't know anyone else with FFA so I do sympathise with you.  It can feel very lonely sometimes and this group is such a comfort, I think.

Anne - I'm so sorry about your cancelled appointment after you got yourself hyped up to go for it. That was very disappointing for you.

I've been knitting hairbands for myself using a variety of different wools. Now I knit all my headbands using bamboo wool. It's very soft and doesn't irritate the scalp at all. I knit mine with a button fastener at the back. That way I can sew the button at just the right point for a comfortable fit.

xx

I found a headband that I like at Target for $5 .  It's made by Goody, and has a Velcro fastener in the back so it doesn't mess up my hair when I put it on.  It's also tapered in the back, so it doesn't stick out under my short hair. 

Debs, good idea cutting the buff headbands in half.  I've looked at them online, but they're always too wide to look right with my short hair. 

My daughter ran the London Marathon last weekend, and we went up to watch. It really brought tears to my eyes seeing people run who had lost both legs, and arms, and eyesight, and it made me feel sure that if they can overcome such things in life and go on to run a marathon, then I can cope with some hairloss ... Happy Easter everyone!

Pam -  I watched the London Marathon on TV and felt humbled by the sheer courage of the disabled runners.  There are certainly worse things than hair loss - upsetting though it is.   I'm particularly aware of this because my daughter has MS (Multiple Sclerosis) and has to cope with that (plus a job and two young children).  When I think about her - and all the other people who live with serious, disabling conditions - it certainly makes me feel I should be able to cope with losing my hair.

(But I still wish I didn't have FFA......).

Happy Easter xx

How can you tell if the FFA is still active?  Brenda, you said your doc said your FFA went to the crown of your head.  Is your scalp just red in appearance?  What does active FFA look like?  Has anyone known someone that has had a hair transplant?

Hi Jess. I can tell if mine is still active by doing a gentle hair pull. The hair will come out in the active area with no difficulty or pain. 

x