Hi Pam - I hope you enjoy your reunion with old friends and relatives and I'd agree with Celia that probably nobody will notice any difference in your hair - they'll just be so delighted to see you again!
Even though I've actually lost two and a half inches off my hairline now, the only person who ever seemed to notice was my daughter who asked me one day why I had started to wear headbands.
We're all different and I take the opposite approach to Celia in that I now tend to tell friends and family, quite casually, that I've got a skin problem that's destroying my hair. I've found that if I am very matter-of-fact about it then people take their cue from me. Well - this approach works for me anyway. But like I said, we're all different and I've had this FFA for over eight years - possibly longer and have more or less come to terms with it.

Pam since you have not seen these folk for 15 years they will not have a clear picture in their head of what you look like, they too will have changed with time, weight/wrinkles/hair greying & thining... so I doubt that your hairline will be noticed. I am like Celia, I only tell very close family and a few close girlfriends, this is simply because I don't want to be in a position of having to educate people about FFA and alopecia when I just want to forget about it and get on with life as normal. When you see your friends I would just play it by ear. Enjoy yourself. XXX

EYELINER TATTOOS

I had my eyebrows tattooed in January and love them. This morning I had eyeliner tattooed because I can see that I am losing some of my eyelashes. The process was as follows:

Applied anaesthetic gel to numb the area.
That is left for several minutes.
Tattoo needle is used to prick the skin and more anaesthetic gel is applied so it can go deeper before the actually pigment is tattoed in.
The upper eyelids are done with eyes closed. It doesn't hurt and there was very little sensation.
The lower eyelids you have eyes open - BUT you look up and away so you don't see a tattoo needle coming at your eye it comes at you from an angle so it is out of your sight. The same procedure is done on the lower eyelid.

I hate injections and nearly faint when I have a blood test, I have a very low pain threshold and I can honestly say this does not hurt and you never seen any needles or tattoo equipment coming near your eyes.

I thoroughly recommend getting your eyelashes enhanced. I just had a subtle 'enhancement' I did not have a thick line of eyeliner applied. If I now lose my eyelashes I have this enhancement in place to mask the hairloss. It is a huge weight off my mind. The effect is very natural and not at all 'madeup'. I went to see my mother after I had it done and she loves it.

You need to ensure you have a very good permenant makeup artist to do your work. In the UK I recommend and go to Belinda Hayle in Chertsey, Surrey.

www.belindahayle.com

I had the work done at 10am today, I have no pain and no swelling at all. Am delighted. XXXXX

Debs, What a wonderful idea for eyeliner. As you say, you must have a super professional to apply & I wouldn't know where to start as I am north of Toronto,Canada. If anyone else has had it done with success, please let me know. My sis had her eyebrows done some years ago but they are rather just too bold in color but she did choose it.

Hi Rita, it does not look like I am wearing eyeline, it looks like I have more eyelashes than I actually have. The eyelash enhancement is much finer and the pigment is placed in eyelash line so it isn't noticeable and ideal to disguise hair loss. There will be practitioners in a major city like Toronto, I would check out wwww.heralopecia.com and ask the ladies on there if they can recommend anyone near you. It is a real art to do this so you do need to find a real pro. XXX

My meeting with Dr Harries last Thursday............I am continuing with the hydroxychloroquine until I see him again in 4 months time. There are still more questions than answers. I find the time I have to sit in a room after being called through from the waiting room quite a difficult time but I guess this is their way of dealing with patients. I saw Dr Harries' registar for about 10 minutes and told him that I continue to lose hair and possibly more so since the med, but that the inflammation on the hairline is less - I put that down to turmeric I think...... He said he felt I was showing signs of anxiety. I waited a while until Dr Harries came in and had a discussion about the usual - triggers for this condition. I said I had read the leaflet regarding Avodart which is the drug used to treat males with enlarged prostate, and that I wouldn't wish to have that one although he said it is increasing in use for the FFA condition. I wonder, Debs when you next see Dr H if you would ask about the stats on success rate using this drug.
Alice - I agree with your comment on the affluent women aspect of FFA. XX

Hi Everyone,
My name is Annie. I live in Missouri, USA. I was diagnosed with FFA on March 14. I have been to three doctors (None have previously treated FFA.), and finally got a prescription for hydroxychloroquine on June 21. It has taken me three months to read through all your comments, and I have learned a great deal. I haven't posted anything before now because I honestly didn't feel like I had anything beneficial to share with you. I'm not far enough into this disease to offer any medical advice, but I do have a couple simple tips that have helped me adjust to looking at myself in the mirror these days. First, my latest (and favorite) derm started me on men's Rogaine (5%) on my first visit 2.5 months ago. This has worked wonders. I have regrown a lot of the fringe around my face, which helps hide the bare spots. I also use it on my eyebrows, which haven't been affected yet. They are thicker than they have been in years! An unexpected bonus is that my eyelashes have gotten longer and thicker than ever before. I do have to warn you that the Rogaine made me shed more than usual about 2 weeks after I started using it. The shedding usually lasts about 6 weeks, which can be scary. My second tip is to use self tanner on the light areas around the face where the hair no longer grows. I use Jergen's oil-free for faces which is less than $10 at drugs stores here in the US. I no longer have to look at the white band that was a constant reminder of where my hairline used to be.
I want you all to know that I have appreciated reading your comments, and how amazing I think you all are.

Thank you, Annie, for the helpful hints. I use Rogaine (men's) as well on my hairline as well as my eyebrows. I think it works wonders too. Also, using self-tanner is a great idea. Plus, remember to use sunscreen as this part has probably not been as exposed to the sun as the rest of the face.

Also, I can't stress enough to find a really good hairdresser. They can do wonders. My hairdresser told me that she has uniquely cut women's hair who hardly have any at all and she does a really good job. You can hardly tell. She does wonders with my hair and said she could even help me if I lose more around my face. So be honest with your hairdresser. They really can work magic and have seen a lot of different kinds of hair problems.

Celia. When Dr Harries mentioned Avodart did he say that he would consider prescribing it to you? My derm prescribed it but I was told that it is a private prescription only drug and therefore costs about £210 for 6 months supply.

Liz - as far as I was aware - Avodart was an option which apparently is increasing in 'popularity'. There was no mention of cost. When do you go back to Salford ? I would really like to know some stats as to the effectiveness of these treatments. I asked about the questionnaire that some of us completed - apparently it is with a derm in Sheffield who is considering the implications.

Hi Celia
I dont think that I shall go back to Salford.I'm just going to let my body do what it needs to do. I considered Avodart but its a strong drug with side effects and never designed for the hairloss that we have so I'm not going to take it. A drug which treats FFA specifically needs to be formulated and then I'll consider it.Maybe if we keep agreeing to take prostate and malaria drugs no specific drug will be designed. After all we are only women and as women we are used to being fobbed off (cynical me talking :o)) xx

Hi Debs. When I was prescribed Avodart Dr Farrant said that not only should I ensure that I dont get pregnant I should do a pregnancy test each month I am on it to doubley make ure. Apparently the effects on an unborn child are devastating x

Hi Ladies, I saw Joe Cross on TV today talking about his 'reboot' healthy eating system. He also had an autoimmune condition and used juicing along with improving his diet by reducing processed foods to cure himself. I know some of your have gone gluten free and used the paleo eating plans in the past. I am not really having much joy with my drug treatment and am becoming increasingly uncomfortable about trying other drugs in the future so I have just ordered myself a juicer from the internet, I have a week off work next week so I shall start to reboot myself and see how I feel. I don't expect a miracle but it will be good for my overall health and I will use ginger, turmeric and fruits/veg from the anti-inflammatory diet plans to try and sort myself out. Have a grand weekend. XXXXXX

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.