I've been taking turmeric capsules for a long time. I think they may be helping but it's hard to know. In the US, you can buy them over the counter at your local grocery store or pharmacy. The last batch I got, I purchased from online from Amazon.com. I do take them with a meal, to avoid stomach upset as from spicy food. I've also found that oolong tea helps with the itching, either hot or iced. I use these in addition plaquenil.

Hi Debs thanks for posting the info, its really interesting about the cucumin I might pop to the health shop today and get some tumeric tablets. Its also a worry about the connection being heriditary, on my first visit to the derm my daughter came with me and that was the first question she asked, I hadn't even thought of it but it was obviously been playing on her mind. But she was told NO it wasn't but other autoimune disease can be. Wether there was not hard evidence as yet and he didn't want her to worry her whole life thinking she too was going to loose her hair. That is one thing which keeps me positive that it is me with this and not her as she is a hairdresser/ beautitian and her hair is so important to her!
Thanks again Debs

Pam, I feel in good spirits after my visit yesterday, just having information is empowevering and makes me positive. I have lost hair in the past few months but that was already on the way out when I started taking plaquenil. I have been taking it for 6 weeks so it will be take a few months to see if it is having any effect. I am heading off to the health food shop this morning to get some tumeric tablets it is worth a try.

Liz, yes I would definately get your mum refered then Dr Harries can do some investigations with you both, he is very interested in looking into the hereditary factor to help understand this condition. There are not many related sufferers around for doctors to get their hands on so to speak.

Rebecca, when Liz and her mum speak to Dr Harries and he does some genetic investigations could your derm run the same tests in Germany so both doctors can contrast and compare the results. If there is the same 'abnormality' in both sets of mother/daughter DNA you could the crack mystery of what causes FFA... or at least point the doctors in the right direction of the genetic component to the condition. xx

www.veganicity.com is a health food supplier based in East Sussex, because the supplements are vegan they don't use lots of binders and the product is well made.

TUMERIC EXTRA tablets are £11.95 for 30 free p&p
Contains: curcumin 95% 200mg, ginger extract 100mg, bromelain and black pepper (piperine) - ginger has anti-inflammatory effects and the bromelain and piperine improve absorption and increase bioavailability of the curcumin. I have looked at lots of formulations online and this is the best I can see in the UK and it is a good price with free p&p.

Thanks so much for the info, I will check this link out.

Hi everyone. Hope that all is well. Celia

Hello all - I'm seeing Dr Harries next Thursday 2nd May - if you have any questions - I would be happy to put them to him. Hope all's well !

Hi ladies. I just finished reading the week's posts. Thank you
Pam and AC for the excellent websites. I will read them tonight.
Interesting. I have been taking strong doses of NSAIDS (anti-imflamatories), for many years as have bad Osteoarthritis - this is not an autoimmune disease like Rhuematoid. But that is why I take any anti-inflamatories that I hear about. The Tumeric I started only 3 months ago - but I have NOT had any inflamation with FFA since then. I also take Ginger and a small amount of some of the other herbs mentioned, plus probiotics.
I recently changed family doctor for various reasons, but because of that, I have learned about several problems I have that I would have NEVER guessed - wonder if they have any relation to FFA? I will mention them in case they may be helpful to anyone. One is severe sleep apenea and one is low cholestrol (way below the minimum) - both of these are fixable but I wonder if they could have any relationship to FFA?
Once I asked my dermatologist why the severeness of my FFA seemed to be getting so much better. I wonder if it is my NSAIDS? Is anyone else taking them? They perscribe them for pain (wihich reduces inflamation in the joints). Curious but I don't know enough to make any assumptions.
Pam what do you think? Also, please check out my April 15 posting for new email address so we can arrange a get-together.

Hi. Hope everyone is having a good weekend.
I've taken myself off both the Doxycycline and Regaine. Both were making me feel ill. Perhaps I have a low tolerance for medication but the Doxycycline was making me feel stressed, giving me ear problems and neverending thrush and the Regaine was making my eyes burn. I'm now dosing myself up on Piriton to try and help. I have started to feel better the past 2 days thankfully.
I'm losing more hair and feeling very sorry for myself. My son said that it looks like a scar where the hair has gone :o(
Has anyone else who sees Dr Harries had thier appointments changed? I've had my June appointment changed 4 times so far. I'm wary of booking train tickets incase it gets changed again.
xx

Hi Liz - I was due to see DR H back in March - 21st - I got a message saying my apt was cancelled. A while later I was given one for the 2nd May - - 6 weeks later - I asked Jean Brock why the appt was changed and she said Dr H was going on holiday. Sorry you seem to have been messed about - to change it 4 times when they must know you are travelling a distance is not good, but we have to do as we are told I guess ! I am not taking the doxy any more either, just a handful of vits and turmeric.........

Hi everyone, thanks for the article Pam, looks interesting. Hope everyone is ok, looking forward to seeing some of you in a couple of weeks. Celia and Liz, when you say you are no longer taking doxy do you mean hydroxychloroquine sulphate or is this a different drug? i'm getting confused!
Is anyone suffering from a sore mouth and tongue, I don't know if its to do with the problem I have with itching salivary gland or its something else.
Liz I hope you are feeling better , I've been thinking of you today, keep your chin up, its hard when your appointments keep changing, but it will be worth it when you do get there. I wonder what he will perscribe you instead.It will be great to talk when we all get together at Celia's.
My sister went to an new salons open day last week, and they had a Halo Elite which uses a laser light to strengthen the follicle so they produce thicker healthier hair for people who have a problem with thinning hair, is this the laser treatment that ther was discussions about a few weeks ago. I might go for a free consultation1!

Hello Debs, Liz, Heidi Jules Caro, Paula hopefully I hope to see soon. I hope the day will be good. Well we shall MAKE it good ! Bring some walking boots/trainers......and we'll get some fresh air - hopefully 3 days later - we will all be cured ! Liz - every time I wash my hair and dry it - the sun is shining through the window (well if it does !) and I can see hair falling. I will ask Dr H if that hair gets replaced or not - but I expect the response will be - not enough evidence to make a judgement. Oh dear. I think it must be a very difficult job for him to see so many ladies with this prob and not to know the answer. But I guess his day must be bespattered with folk with other derm probs.......I have said before - if a really high profile person developed this FFA prob - it would maybe get solved sooner. X

Thanks for the clarification Debs!
Celia its funny you should say that about a high profile person. I was watching E News this weekend ( American show biz program!) and they were talking about a Reba Mcintire, a famous country singer and they showed a picture and I immediately thought she looks like she has FFA, I don't know if she has or not but it did make me sit up and have a second look. I did go on the internet to investigate but there wasn't anything, not that I want the poor women to suffer from it but I did think it would be great if someone famous could front our cause!

Maybe we should all run naked through London. That way we'd be high profile. The newspapers can fight our cause as we sit in jail. 'Free the FFA 57!' xx :o)

Ha ! Ha ! Liz - that sounds a shade too desperate ! Although I must say - desperate is really how I feel some mornings when I wake up and the enormity of this horrible disease is there. How good it would be to wake up and not have this to be The First Thing to think about ! I expect many of you feel the same. Oh dear, this self-pity is NOT the way forward ! Interesting what you said, Heidi, about the singer - I know that in one year from the 23rd or so of June we have 'collected' over 50 women on this site with the problem. Sounds a lot, but I think this FFA is still very rare - just over 50 people in a few countries is not many. There must be a lot our there who suffer with this and are not able to communicate with others in the way we do. The loneliness and fear I personally felt before 'meeting' you ladies was scary to say the least. Well - tomorrow's a new day - hope it's a good one for you all ! x

My hair is getting worse :o( I've now lost this much, and I've only had this 'thing' for 18 months. I'm not feeling depressed about it today, just angry. Tomorrow I may be depressed and then I shall drink tea and knit another headband!
xx

Liz - I am about 18 months down the line also. Suggest you stop covering your hairline with a hairband and instead make a fringe. Just bring your hair down over your forehead. Not sure how long the rest of your hair is, but maybe have it cut shorter ? Fluff it up a bit. Yesterday I persevered with some product from Philip Kingsley - anti dandruff cream - you put it on your hairline and wait 20 mins then shampoo as normal. I have to say that today - I have had no redness on the hairline and haven't used the dermovate/clob cream today. Liz - get a little air to your hairline, don't cover it with a hairband - just let your remaining hair do the trick. I am so sorry - this is just a thought. I do look forward to meeting you. Just try what I suggest, please. x

Hi Celia. I dont wear the hairband much, only when I want to forget about the hairloss. I wear it now several times a week and sometimes in the evening. I have a son with Aspegers who is facinated by my hairloss and not in a good way. A few days back he told me that 'it looks like a scar around your head'. I said to him 'Are you being horrible about my hair?' He looked at me and said, 'No, I'm being horrible about the bit that has no hair'. He also keeps asking if I have cancer. He thinks that losing my hair is a symptom of cancer even though I have tried to explain that it's not...And so, that is why I am wearing the headband more! And, alas, I dont have enough decent hair to make a fringe. The hair on the top of my head is thin and has gone frizzy. I asked the hairdresser and she said there is not enough hair. I may try some Philip Kingsley shampoo. My hair is so dry. I went to the doctors yesterday with itchy sore ears and she mentioned anti inflammitory drops for them or almond oil. I wonder if that would help my head.
xx

Pam - I too have no idea why days are different - could be diet/stress or something we do not know about...... I am using the Philip Kingsley dandruff treatment and it worked the other day - I use Kerastase shampoo and also the Kerastase Bain Satin conditioner - the latter is making a difference to dryness - it actually feels like hair again ! For how long who knows ? Of to run around the gym - escape a bit ! x

I saw a woman at work at couple of days ago that most definately has FFA, I have never met her before and I decided not to approach her in case I caused offence. Her hair loss is about the same as mine (which I think is about the same as Liz) and she was wearing her hair long and up in a pony tail. Looking at her straight on was OK but from the side view the FFA was evident. I saw 2 ladies in the waiting area at the hospital the other week when I saw Dr Harries, both had FFA and were trying to style their hair without using supplemental hair. I can see that it is possible to brush it forwards and wear a fringe to a certain extent but the hair loss notices sideways on more than when you look at yourself in a mirror from the front view. Pam's suggestion of getting a fringe piece would work as would Celia's suggestion of having a fringe cut in from further back if your hair will allow. I would just say having seen these 3 ladies and their hair styles do just check yourselves out from the side view when deciding how you will manage your hairdos because from the side view the recession is more noticeable than from the front.

Hello all - I see Dr Harries in the morning and will ask him the q about DNA testing and what would they be looking to identify. I am going with rather a lack of optimism, I'm afraid, but that's partly my mindset at the moment - I will be very upbeat when I see you all though - I promise ! We are collecting Martyn's 92 year old aunt (she has a fine head of hair !!!) from near Manchester after my appt. and having her to stay for a week - feed her up, cheer her up and take her back happy - she is very lonely. Debs - I think I said a few days ago - truly every time I go to the DIY store B & Q I see at least one person with significant hairloss - even 2 cashiers and I end up nudging Martyn. Perhaps this thing has always been around and you don't notice it until it affects you personally.
Liz , I have worked with youngsters with Aspergers Syndrome in mainstream school and I am sure this must be very hard to deal with at home, cannot help your stress levels at times. I hope your school is helpful. See you soon - any other questions - I will check this website in the morning before I set off. Have a good day - sunshine ! x

Paula - I rather stupidly because of security risk, deleted my inbox - you need to invite me as a friend and then I can give you directions via this internal e mail. Look forward to seeing you.

Hello all, I wanted to share that I went to get a second opinion of my hair loss yesterday to a different dermatologist than my previous one. He was a bit more optimistic which made me feel better. When I was diagnosed in March 2012, my other derm did a biopsy on one section of hair and said it was FFA, and offered no other treatment and I was too much in shock to think of any questions to ask. So after a year of agonizing over it and losing more hair, I saw a new doctor now. He looked at my hair more thoroughly and said he's not entirely convinced I have FFA and may be Alopecia Areata instead, or a combination of both. He said FFA primarily only occured in women of African-American descent which I am not, but I'm not sure I agree with that since I've come to know all of you here. But he is going to look over all my previous dermatology records and then probably do another biopsy. One reason I hadn't gone back to the derm is my health insurance says they don't cover treatment for alopecia and my other appointments in the past got very expensive. But I decided I needed to go back for some answers, whether it's covered or not. A few things he did recommend for hair loss was Rogaine 5% and Biotin 5000 mcg a day. He will get back to me in a few weeks and let me know what to do next, and I feel better about him as a doctor than I did the previous one. I know the parts above my ears and forehead that are very bald probably won't grow back, but if I can save more hair on the sides and back at least it will look better in general. I'm interested in the Buffs that were mentioned, I just wonder how hot it would be, but at least I could wear one as a headband over my bald spots and when the wind blows I won't look so weird. I'm not really a hat person, although I have become one. Celia, good luck at your appointment!

CELIA, I wish you the very best of luck tomorrow with Dr Harries. As I only saw him a few weeks ago I don't have any questions for him. I hope you have a positive experience. XXX

KAREN, these derms do seem to have some odd ideas about FFA only affecting specific ethnic groups, Dr Harries thought that women of african origin did not get FFA... I told him that besides myself I know of 3 black women with it.... and now your derm thinks the opposite... I think that really is indicative of how little the medical profession seems to know about FFA and how little empirical research has been conducted until now. I am glad that you feel happier with this new derm and I hope you are able to find an effective treatment plan with them.