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???

Hello Donna, I am in Ontario. It is definitely a daily chore to fill in my sparse eyebrows and will consider tattooing when I feel ready or perhaps fed up. When you say give up your eyebrows, do you mean when they tattoo, the brow hairs you had will be removed.? I would really love to have the eyeliner but I have a real issue with even an annual eye exam, probably couldn't do it unless I'm drugged & one must keep their eyes open so doesn't sound too promising for me.

Rita, you don't remove your own eyebrow hair to have them tattooed. People have their eyebrows tattooed that don't suffer with hair loss simply as a beauty treatment. You tattoo over your eyebrow hair. I had my eyelashes enhanced a couple of weeks ago - this is a very fine tattoo in the lash line. I am a huge baby and can't stand anyoone going near my eyes - however you look to the corner of the room so you don't see the practioners hand coming towards your eye and they are out of your line of sight.

I can't stress this enough - please ladies if you are losing eyebrow and eyelashes get semi-permenant makeup (tattoos) I know it is pricey but once it is done it is a huge relief and one less thing to stress you out with this condition. There is no need to struggle with our eyebrows/eyelashes when this beauty treatment available. You go back approx 18 months just to get the colour topped up. This is not as much money as the initial treatment. FFA is not a cheap condition and the bottom line is we have to pay out quite a bit of money to normalise our appearances. I am delighted with my eyebrows and eyelashes. It really does wonders for my confidence and self esteem. XXXXX

Judy, Yes!! I have the extreme sweating around my hairline a lot! I also have wondered if this was somehow connected to the FFA. I also get hot flashes, but the worst of it is on my face, and especially my forehead. Hot weather also brings mine on, but other things seem to trigger it too. I am currently away on vacation, but wanted to chime in on this particular issue. I think it IS somehow connected.

sorry, first time leaving a comment. Apparently :( I need computer101 lol to figure it out. Debs :)HI, I know your in the U.K., but how did you locate a semi-permenant makeup artist? I've googled eyebrow tattoo, but my gosh, some of those pics are scarier than what I'm already seeing in the mirror. Thank you

Regarding the sweating, I remember running across something on the internet that referred to FFA as sweating alopecia. It must be a fairly common symptom. So far, I've only had the sweating when I started using topical steroids on my scalp (other than the occasional normal hot flashes associated with menopause).

Carol, I also had some sleep issues with the Plaquenil at first. I had trouble falling asleep, then would wake up every hour. I was also having very strange dreams when I did manage to get some sleep. I stopped drinking any caffeine in the afternoon and started taking my 2nd pill earlier in the day. My sleep pattern is gradually getting better. I've been taking it for almost four weeks, and it has relieved most of my itching, so I'll keep taking it if possible.

Hi Jules. I got my Regaine prescribed on a normal prescription. Do gps have different rules depending on where you live? x

I was told by my GP that I had thinning(atrophy)of the skin where I put Clobetasol Liquid on.She never really said where to put it and I guess I was wasting my time& thinning my skin by putting it on where hair has already disappeared. Who got clear direction on application method? Who just applies where the itchiness occurs & who applies it here & there where the rest of your hair is.?Do you apply sparingly? I haven't found a great way to do so. Thanks.

It's interesting how different the advice can vary from doctor to doctor. Mine said to rub the Clobetesol on the affected areas of the hairline going back only 1/4 inch. I used it for two months, but it made my scalp so tender that I couldn't even stand to go outside on a windy day. I finally gave up & stopped using it a week ago. I can't tell you how much better my scalp feels.

Simone, I am taking plaquenil snd the last time I saw my derm she scheduled a recall visit in 6 months. I think she will do some blood work then. I see my eye doc once a year. I found clobetasol to be very irritating, something I surely don't need.

Am I understanding correctly that it is possible to stop the progession of FFA if you can stop the inflammation? Is that our main goal in controlling this disease to stop inflammation? I am going to the doctor tomorrow for my biopsy results (but feel sure FFA is already the diagnosis from what my dermatologist said). I want to make sure I understand as much as I can before I go in there. Is "inflammation" and "active" the same thing? Thank you for any advise. I am overwhelmed with it all and don't know where to start :( diet, drugs, Rogaine??

Hello Kay, Like Jules, I can only say I wish I had some answers for you! I got the impression from the first (Consultant) dermatologist I saw some years ago about FFA that if the inflammation stopped then the progress of the hairloss would be halted but I've used Clobetasol for several years and though it helps with the irritation and itching it hasn't stopped the hair loss. And some ladies don't seem to have any inflammation and they are still losing hair. I guess the dermatologists simply don't know what will work. What works best for me is a healthy, sensible diet with lots of fruit and vegetables, plenty of sleep, avoiding stress, keeping cheerful and busy ..... and hoping that it 'burns out' - which I have been told can happen. I know it's a lot to deal with. They're bound to come up with a cure eventually, though. Sorry I can't be more help.

Jules, please see the email I have sent you.

Ladies, I am afraid my job as a shift worker is going to prove impossible for me to make the meetings for this focus group. I had wrongly assumed I could discuss the focus group whilst I had my appointment with Dr Harries in Manchester. I have jump through all sorts of hoops to get a day off on a specifc date for medical appointments but I have very little control over where my company puts my days off so I will not be able to respresent us at these meetings.

Sorry Jules to mess you about. xxxx