April I recall that we did have some posts on here several months ago about laser treatment. I have also seen posts about using excimer lasers on hair loss on other alopecia forums. I think it is a very good idea. In the UK these lasers are not offered on our national health service for hair loss and there are not that many around, apart from those used to treat short-sightedness. Do let us know how you get on. Good luck xxxx

Hi Chrisy - yes the steroid injections can make lines in your forehead. I have had them 3 times now. I have a vertical'line' down the centre of my forehead and some dimpling where the injections went in. Dr Harries said he wasn't going to do the shots agin the last time I saw him a couple of weeks ago, because of the effect. I am not so sure they help - it is the same with the medication in a way - we cannot be sure that any change in the condition is due to meds or injections, or if whatever happens would have happened anyway. I hope that makes sense. I am curious to know what age you are, Chrisy, as the majority of fellow sufferers seem to be over 50. Can you think of a possible 'trigger' for this happening to you ?
April, I hope your laser treatment works ! X

I recently read an article by Dr.Maria Hordinsky,derm fr. University of Minesota: http://consults.blogs.nytimes.com/2010/08/26/can-stress-cause-the-h.... Of course the FFA may not fit into what the dr. suspects and that is some connection with the nervous system. The use of botox +/or Capsaicin were mentioned. I too, had 2 trauma type stressors but am unsure if this contributed. I had wondered also if a medication for B/P I've taken for a few yrs now could be implicated. We could go mad trying to be our own researcher but not much seems to be going on that I can find. It appears more women who are not postmenopausal are also afflicted but we have no statistics on this. My dr only told me it affects postmenopausal women.

With essential oils you use a carrier oil, and use a ratio of 10ml carrier oil with 5/6 drops of essentail oils. I use 4 drops turmeric and 2 drops lavender. There are other essential oils that are recommended for other types of alopecia but I wanted to get more turmeric into my body and apply it topically to my scalp because it is proven to stop inflammation in other autoimmune conditions and if you stop the inflammation in FFA we dont lose our hair. Turmeric is proven to be more effective the steroids in other autoimmune conditions. Lavendar is antibacterial.

I wanted to let you know that more women who are premenopausal are getting this. I was 40 when mine started, and I am not even perimenopausal. I am the youngest FFA person that my doctor has seen. So the belief that this disease is for postmenopausal women is not true anymore.

Also, I have had steroid shots a couple of different times in my journey. Both times I had lines on my head and indentations. While it takes a long time to fill in - maybe 6 months or more - it will eventually. But you have to stop having the shots for them to fill in to normal.

Hi Christiekd - you are totally right !
The surprising thing is that derms - well some of them still believe that this is a menopausal prob. And some derms even said it was only affecting white females. Simply not true ! We have to put some kind of faith in those guys who are involved in research. I feel so very sorry that some of you of child bearing age who wish to start/continue to have a family are affected in this way. I know that Dr harries has asked Jules for some ideas as to where he might focus in the new research.
Had a friend and her husband round last evening - I think my hair prob is still hideable but how I hate it !
We have a friend coming over this aft from Dubai where we used to live. His daughter aged 34 has just lost the battle with breast cancer - he and his second wife and family came over for the funeral.
I should stop whingeing and get on with it. So many of you are so inspiring in your outlook and that is great and we need to keep going with that mindset.
My eyelashes are disappearing. None on the lower lids. Me me me !
I do hope I haven't gone on for too long - but sometimes it is good to get it off your chest ! x

Yes my derm said white, affluent, postmenopausal - take this doxycycline & apply the topical clobetasol and all will be good. The problem is no one has found an answer to this affliction so why change derms.

I think it's funny how every dermatologist has different opinions on this disease. The new derm I went to said that FFA mostly affects women of African American descent, but I see a lot of caucasian women on this website and I'm about as white as you can get! I'm now 48 and this started for me about 3 years ago when I was 45, and I'm still not in menopause yet. I don't see how affluence would have any affect on this other than that poorer women who don't have health insurance may not go to the doctor and get diagnosed as often. None of them are on the same page! Very frustrating!

Rita - you said you were told to apply Clob. and take Doxy. Have you asked your derm about the stats regarding the success rate on this regime ? I wonder if they have any ?
Karen you are absolutely right ! What is it with these experts - that they cannot understand some fairly fundamental facts ?
I was told by Dr Harries - that my FFA may be 'different' to another person's, Oh dear. So - totally confused !
I think it is about time that we acquaint the experts with some facts that we 'sufferers' have gathered ! x

Celia - couldn't agree more with what you're saying. Personally I think the bottom line is that none of the specialists really have much idea what causes FFA and what will cure it and they're just trying out anything that they think might work.
I asked my dermatologist what sort of success rate she had with Hydroxychloroquine because I was reluctant to take it. I felt her reply was a bit vague - she said she had 'something over 50% success'.
As I understand it the Clobetasol is simply to reduce inflammation and the theory is that if there's no inflammation then the hair follicles won't be destroyed. Well I've been using Clobetasol (Deermovate) for over three years and my hair is still disappearing and the inflammation is still there. (Sigh!)

Celia, she said the same thing roughly 50% success but didn't look convincing. I think we're guinea pigs but then no meaningful research has been done and so the derms can only guess at what to suggest and most likely tend to exaggerate the positive outcome. Perhaps our own research will point out the factors we all have in common. We'd have to come up with a comprehensive questionaire. Those that were comfortable with taking part may well learn what that something is which the researchers have not found. Yes I know it's a pipe dream as even if we found the common element assuming it's not inflammation,the question remains-how to fix it.

my doc recently told me to use the topical clobetasol l week on 1 week off as she referred to the thinning at my frontal scalp as atrophied. I only apply it sparingly to scalp and experience some itchiness through the day. My doc, however, said to sprinkle it on and work through (not happening).

Ladies - do not worry unduly about thinning skin. Focus more on thinning hair !
I get facial inflammation from time to time and this is connected with the condition. Usually this is around the hairline on my forehead.Apart from the physical probs - is there anyone out there who is able to wake up and not think instantly about FFA ? Certainly the dermatologists don't have the answer to this either ! Interestingly enough.............the first derm I saw in Dubai had thinning hair - used rogaine....the trichologist I saw there also suggested he could do hair transplant....not an option with FFA, and the next trichologist I saw in UK was also displaying male pattern hairloss. I wondered whether this could be contagious.

Only joking !
I hope that those of you in UK are enjoying the lovely weather.
x

Pam W, I have also been researching immunosuppressant drugs so I can make an informed decision if the Plaquenil/Clobatesol combination doesn't work. From what I've read, the immunosuppressants work by keeping your body from attacking your hair follicles instead of just treating the inflammation. I can't imagine a doctor prescribing immunosuppressants with all the possible side effects. I've seen three different dermatologists since being diagnosed in mid March. All three recommended starting with a topical steroid only. It took a lot of convincing on my part to even get a prescription for Plaquenil.

http://http://www.carfintl.org/_articles/drugs-in-dermatology-2012.pdf

Annie and Rebecca, I am attaching the recommendations from CARF about the drugs that are recommended for FFA. I have actually taken this document with me to my dermatologist, who really appreciated it because I am the only one that she has ever treated with this disease. The specialist that I see from UCSD is also aware of these guidelines. Doctors do prescribe immunosuppressant's and they usually work but the disease usually returns after stopping.

Rebecca, prednisone is prescribed for the disease as a bridge until the plaquenil has a chance to begin working. My sister has to take this drug for her autoimmune disease and I know that there are many unpleasant side effects (the least of which is hair loss!) So, I guess we are all going to have to pick our poison based on how much we can all tolerate in terms of our hair loss vs. risk.

There are new biological drugs available now that people with arthritis, psoriasis, and Crohn's disease take - like Humera and a few others that I see on TV all the time. I am just wondering if these would be a possibility for us.

Thanks, Pam. I also contacted CARF because there are no doctors in my state listed as treating FFA that are in my insurance network. A representative e-mailed the article for me take to my doctor. I'm not sure I would have gotten the Plaquenil prescription without it. The doctors in my area seem to be very conservative. CARF will also correspond with your current doctor if he/she has any questions regarding your treatment.

Hello Terry - welcome.
I hope that it is comforting for you to find other people with this prob. I felt the loneliness initially when I was diagnosed - could not believe it !
But then googling and finding Alopecia World, and subsequently setting up this site - I found it very helpful. But what still surprises me................after one year - we have just 76 members in several countries. This is a rare and little understood and difficult disease to treat. As Carol USA said - it's not life-threatening but certainly life changing.
Terry - I hope you have a worthwhile trip to Salford - I don't know where you live, but there are a few of us who travel some distance to see him. My diagnosis was over 18 months ago when I was living in Dubai. I found the page that was taken from the Daily Mail, a UK paper - there was an article about FFA - the new epidemic among women...........from this I heard about Dr Harries who did a PhD in alopecia. Also mentioned in the article was Dr Carol Michaelides who works at the Philip Kingsley salon in London. I went there and found the experience quite hard to deal with. Having been diagnosed by a derm in Dubai - I wanted to find out more. But I got more of the same - no cure - only acceptance.

I think that Dr Harries is our only hope in the UK. Several of us completed a questionnaire recently and the results are still being processed.

I asked a couple of days ago if there are any of you who can wake up and not instantly think of FFA ?

I still am not going to tell anyone here apart from family. I cannot yet come to terms with wig wearing and I applaud those of you who have.
What is the name of the immune suppressant drug ?

What is the recipe for not letting this take over one's life ?
x

Hi Celia - I can honestly say that I do not wake up every morning and immediately think about FFA.
Of course, I have had several years to get used to gradually losing my hair and I've found that it's something I've now learned to accept.
My daughter - a young mother - has been diagnosed with a far more serious (and potentially crippling) auto-immune condition and is being very positive, pragmatic and brave about it and though she is a constant worry, her diagnosis helped put my problems in perspective for me.
I have decided to get on with my life and if people don't like what they see when they look at me - well they can look the other way!
I enjoy my wigs - they're fun, look good and boost my confidence but I don't feel I am defined by my hair.
I've decided focus on the fact that in many ways I'm blessed.
The bottom line - for me anyway is that I detest having FFA but I refuse to build my life round it.
Sorry to rant a bit. This support group is really good and supportive and my heart goes out to the ladies who are newly diagnosed. It's a tough time for you all, I know.

I am also bothered by lot by an itchy, sensative scalp. It sounfs weird but the thing that seems to calm it down best is drinking oolong tea. I read that it helps psoriasis and eczema, so decided to try it. I now drink it daily, hot and iced. For topical relief, I rub in some tea tree oil. Both can be ordered from Amazon at reasonable prices.the Clobetsol was too strong for me.

Terry, I have had good luck with the men's 5% Minoxidil foam. I have been using for 3 months at the recommendation of my doctor. I have regrown a lot of the fringe around my face and have new hairs about an inch long all over my scalp. I did have an initial shedding from week 2 through week 6 after I started using it. This is normal, and a good sign that new hairs are growing in and pushing the old hairs out. It's not easy seeing all those lost hairs on your bathroom counter when the last thing you want to do is lose more hair, but I honestly think that that Minidoxil is the only thing I've used since my diagnosis 4 months ago that makes me feel like I'm actually seeing some positive results.

MINOXIDIL (also called rogaine and regaine) Hi Ladies, this is very interesting that the minoxidil is working for you. The first person that diagnosed FFA for me was a trichologist at the Belgravia Hair Loss Clinic in London. This was after my GP had told me I had alopecia but did not know what type! She told me to go back to my GP and ask for a scalp biopsy to get the FFA confirmed. I was supposed to go back to the trichologist and she was going to put me on a strong formulation of minoxidil but I did not go back and have been seeing dermatologists ever since.

How many of your ladies have used minoxidli ? Has it worked for you all?

Perhaps I should clarify my earlier post regarding Minoxidil. I should have said that it has worked great for the areas that haven't been affected by the FFA. Unfortunately, those spots are still bare. I have been able to regrow a lot of the short baby hairs around my face, which helps to cover up the bare spots. I use it on my entire scalp to thicken up the existing hair as well as on my eyebrows, which haven't been affected yet. As an added bonus, my eyelashes have gotten longer & thicker. Maybe the FFA will take longer to advance if there's more hair follicles to attack. One can always hope....

Hi Annie & Rebecca, many thanks for that info. Glad the minoxidil is helping to thicken up your remaining hair and eyebrows. XXXX

Has anyone noted any weight gain associated with Plaquenil - I have gained 4 kilos since starting this - not good ! Still losing hair !

I had a consultation today with Dr Harries. I have been taking the hydroxychloroquine sulphate for 4 months (2 a day). The sides of my hair and temples have not lost any hair but my front hairline has. I am going to take the drug until November (so for another 4 months) and then go back to see if the hair loss has slowed down. I know this drug takes a few months to get into our systems and I don't get any side effects so I will carry on till November and see how it goes. I also continue to use my turmeric supplements. I am going to start changing my diet and adopting the anti-inflammatory diet approach to try and give myself every possible chance of sorting this out. I do feel positive that whatever happens I have done my best, as we all have, to get this FFA under control. Have a fab weekend. XXXX

just had my eyebrows tattooed. Am taking bad seeing eyebrows lol

Hello Terry,re the Vit.D low levels.I too, had same & both MD & Naturpath said most people who live in our climates have such.I take 5 vit.D.Drops (5,000 IU) & have brought level up.Re sweating-I've had upper body incl.head ever since peri-menopause(15 yrs.+, could be from menopause or from a med one is taking but not aware symptom of FFA. Re tattoed eyebrows-could do that, eyelashes-a bit nervous but the results as Deb has experienced would be welcomed.

Terry, I had some sweating while my body was adjusting to the topical steroids the doctor prescribed for my scalp. This is normal and just lasted about a month for me.

Hi everyone. Hope you are all enjoying the sunshine :o) I have just had the most fabulous week in Cornwall. Whilst I was a way my mum had a diagnosis of FFA by a dermatologist where she lives. Her dermatologist said it was the first case of FFA that she had ever seen. Anyway, I'm guessing that confirms a hereditory link, or that mum and me passed under a toxic cloud some years back. Hope you all have a fab rest of your weekend xx

Terry, I am another with the extreme sweating, only on the face, mostly forehead, appears unexpectably and mostly in the hot weather - alot like "hot flashes" which I am many years past. Several years ago my doctor thought it was a hormonal imbalance and gave me premarin (didn't help).
When I was diagnosed with FFA I thought that maybe this forehead
sweating was the cause???
Anyone else have this???