Rita - I have colored my hair for about 25 years....but so many people color their hair who don't get FFA, so I don't know. There seem to be so many "what if's" out there...sometimes it drives me crazy. I am a researcher, so I want answers to everything...and I don't think I'm going to get one for this. I, too, have always been a healthy eater and have exercised regularly, including yoga...always took pride in my appearance...especially my hair. It is such an ironic disease. Ugh.

I have also considered acupuncture, but haven't looked into that yet. I would be interested to hear about any experiences with it for FFA.

Jodie - 7 years is a long time. Have you moved on to wearing a wig yet. I too think turmeric is having a beneficial effect. Do you take any drugs to help with the condition ?

Pam, I have been ON & OFF a very mild dose of Bio-identical (creams) hormones.I haven't taken regular hormones,have colored my hair for many yrs, have been on B/P med for 7 1/2 yrs, exercised most of my life, first went to a derm re thinning hair 10 yrs ago but was told it's probably genetic & part of aging and am really not sure when the frontal area started to disappear.

Pam, I was on HRT (Vivelle) for about 5 years, starting about a year before my first hairloss started. My hormones were going crazy at that time and I had a lot of anxiety...panic attacks almost. The HRT was a God-send to me at that time, but I have also wondered about it and the hairloss (and even called Vivelle once and asked them about it)...but, it could also just be the huge hormonal swings during perimenopause? I was also having insane periods at that time and was losing a lot of iron. My ferratin level was almost non-existant. I also got a bad case of influenza that same year that everything was going crazy, it took me a long time to recover from that. I don't know...there were so many factors going on for me during that year. Sorry about all the details, but I always think details can be helpful because maybe someone else had a similar experience. Anyway, I have also had FFA for about 7 years, although it went undiagnosed (properly) until this current shed started and I started to really look for answers. Mine seemed to go into "remission" for about 4 years until a few months ago.

Is it just me or does anyone else get cramps and diarrhoea from the placquinel.I'm taking iron supplements as well and the combination can have a dreadful effect

Jodie, can you please advise how much turmeric you take and what brand you are using ?? I am using it too and am happy to try different formulations if people think their brand is effective. I am using veganicity brand. Thanks

Turmeric Essential Oil... have seen on internet you can apply turmeric directly to skin. There are quite a few 'receipes' where you mix turmeric powder with water or honey and apply, this method will leave a temporary yellow stain!! However, I hadn't realised you can get turmeric essential oils. I do sometimes use essentail oils in a carrier lotion or oil. I am not applying anything to my scalp so I may as well get some turmeric essentail oil, there are lots of brands on the internet, mix it with a carrier oil and put it on. Turmeric is used topically for psoriasis, scabies, ringworm, cuts etc.. it is safe to use on skin. I will report back how it goes. I hope taking it internally and externally will help reduce inflammation. Have a lovely Sunday everyone. XXXXX

On the subject of turmeric - I am using a Solgar product - Turmeric Root Extract - it's a PHYO2X blend of natural anti-oxidants - free from salt wheat soy gluten and dairy products - HOW DO THEY DO THAT ? !!!!!! Ha ! I take one a day. Am still using hydroxychloroquine and appear to have one of the side effects - hair loss .......................using dermovate (clobetasol) one a day - at night. So - losing my hair, trying to keep my sense of humour. The arsenal of pills includes a product - one pill a day for strengthening hair - high strength silica complex containing calcium, magnesium, zinc, boron, also aloe vera. Oh, and milk thistle to help counter the effect of all of this on the liver. Hmmm !
I am beginning to think now that research should be focussing on the cure, primarily, the cause (s) may never be pinpointed. I'm sure many of you would disagree with me on this ! XX

Thank you for all your comments on turmeric - I had heard that it was supposed to be good for you, but didn`t realise it might be helpful in this condition. I will try it!
I have had FFA for aobut ten years, initially it started with losing my eyebrows and hair on my legs and arms, and then it progressed slowly up my forehead, so that now I have quite a visible hairloss of about two inches all round my hairline. I have tried a lot of the products mentioned, but I don`t really know if they have been effective, as the condition has not been arrested. I am currently taking hydroxochloroqine, but am not convinced that it helps either, and am never that happy about taking any drug on a long term basis.
I have been able to mask by condition by brushing my hair forwards, but recently have started to look at wigs and other concealing methods such as couvre and toppik. Has anyone had any experience of using them? Would elcome any advice.

Pam - I just read your latest post and you seem to have had almost exactly the same experiences with and progression of FFA as I have. I've now lost two and a half inches of hair from my forehead and I've recently started to wear a hairpiece which is really great and has given me a lot more confidence. So I'd say to you to give hairpieces a try. I've never tried couvre or toppik though I've seen them advertised so I'd be interested to hear from anyone who uses them.
I've just come back from holiday and the hairpiece I took was a great success. It was even totally secure on a breezy day on the top deck of an open-top bus! Like you I am not sure about taking hydroxychloroquine long term but I'm happy to take a natural product like turmeric (which I take in capsules) I really think that for me it's best to just learn to accept that I've got this problem and just get on with life. After all, this condition, upsetting as it is, won't kill me - there are a lot worse diseases I could have!
As for wearing wigs - well I just regard mine as a fashion accessory.

Jodie, you need to put the essential oil in either a carrier oil or a lotion (one without any perfume, Simple moisturiser is OK). I am using jojoba oil as my carrier oil.

10ml of jojoba oil (or 10ml or Simple lotion) to 5 drops of essential oil is the usual ratio.

I have used different essential oils before but not turmeric.

I am going to put some lavender in my blend because it is healing for the skin, you can use it undiluted on burns in fact and it will make the blend smell nice. Lavender has been used in hairloss essential oil blends. It is best to keep the blend simple with just 2/3 essential oils. I am going to put a few drops of the blend on my fingertips and work it through the first inch of my hair. Turmeric is applied topically for skin conditions with success so it can't do any harm. (You might want to do a small patch test first just to make sure you are not allergic to anything in the blend before you put it on). Jojoba oil is not greasy so it should sink in and not leave stickiness. Alternatively you can put the essential oils in a cheap Simple lotion and that will sink in nicely I have used Simple before to carry essential oils.

I will use 3 drops turmeric and 2 drops lavender in 10ml jojoba oil.

www.oshadhi.co.uk 01223 242242
organic jojoba oil £6.75
turmeric essential oil £9.75
lavender £3.49

I love the smell of essential oils and find them very relaxing so it will be a nice treatment to use.

You are all so positive and pragmatic about stuff like wearing wigs and accepting the hair loss. I feel almost ashamed to still be whimpering and freaking out about what is a tiny loss so far. I am so impressed by your strength.

Celia I do hope that the hydroxchloquine will work out for you and this side effect of hair loss is just a temporary thing where the hair will grow back. I would like the cause of FFA to be isolated but no doubt it is a mixture of our genes, environment etc.. all acting together. So many women are now being diagnosed, which is dreadful but maybe with more patients the doctors can find an effective treatment, I wish they would do research into some of the natural alternatives because they have been shown to be effective in other autoimmune conditions. Then we could have a definitive dose of turmeric to take. XXXX

Dee, please don't feel ashamed of freaking out about your hair loss. I sympathise with you because I too did a fair amount of freaking out when I first realised that my hair was disappearing but I've had several years to get used to the idea.
The fact that wearing a hairpiece could actually be fun and even empowering came as a complete surprise to me.
I really liked Sandy's approach to wigs - that she just' plops one on' and off she goes!

Kath - thanks for your comments. Funny thing is my hair has always been a pretty miserable affair, fine, floppy and a mousy brown but how I treasure it now. I don't think I can do a part head of hair even for in private. So when do you shave off what's left and go down the scarf and wig route ? Anyone like to share their personal experience ?
I also don't want people to think I've had chemotherapy and feel concerned and sorry for me. So will I tell more people?

Sandy - thanks for the info.
I was looking back and you were one of the first ladies to comment on this site. It started one year ago today. You have come a long way and sound soooooooooooo upbeat now ! That's great ! How short is your own hair now ? Do you go to a salon to have it cut now and again ?

Carol - I looked at the wig support group earlier today - I am not quite ready yet, but it looks like a good one. Some ladies here have had this problem for a number of years. For me it's only been 18 months but it feels like a lifetime ! I totally admire many of you who haven't let IT take over your life - I am still battling with this. It's so comforting though to know there are many people out there who understand. I see Dr Harries on Thursday and sometimes I think that making that round trip is a little pointless. Any questions any of you might have - I will ask. XX

Yesterday was my 3rd visit to derm. One has to see the assistant prior and told me in their research, FFA was seen mainly in Postmenopausal,Caucasian,Affluent Women. The word affluent startled me(I would consider myself middle class)and I wondered-ok-prob.eats well/colors hair as I do,perhaps a multitude of vitamins etc. What the heck does this all mean really? Eat poorly,discontinue hair coloring & vits if this is what causes this affliction. Anyway, the Derm came in & told her I had tried topical Clobetasol for 8 mths now & hair continued to shed and didn't really want to do the oral drug route. However, because she continuously reminded me that if I did nothing & give up,I would surely lose much of my hair, I came away with the dreaded Overused drug in society, an antibiotic. The one she prescribed is Doxycycline. I immediately went to the health store for probiotics but am hugely uptight about taking this drug for 3 mth trial .She also said to continue w/Clobetasol.

Sandy's comments inspire me. I also wear synthetic, open wefted wigs and live in a hot climate and am outside most of the day. A couple of weeks ago I experimented with leaving my own puny hair down or wearing my wig in a low ponytail. The ponytail was much cooler. I could never get my own hair into a good ponytail anyway, so that is not an option.
BTW, my policy in selling wigs to my clients is to give the lowest online price I can find on the day of the sale. While this may not make as much profit, I still do make money. I have found that the online stores use a bigger markup than the manufacturer recommends and then give the discount. If storefront retailers were more customer oriented, they would compete with the online stores and still make a profit. Unfortunately many do not see things this way.

Rita, I suspect that the reason derms are seeing FFA in "affluent" women is b/c they are the ones who seek out a specialist when they are losing hair. I believe that FFA is a lot more common than is generally thought and that a lot of postmenopausal women think it's just part of normal hair thinning that often comes with aging. Most of us will admit that we didn't notice it right away.

I wore my wig for over 17 hours last week at work... I honestly did not know I had anything on my head. There is no sensation from a wig, it isn't hot, itchy or anything else. 95% of women have an average size head, different wig brands can vary slightly but you have straps inside (like a bra) that you can loosen/tighten up. Like the other ladies have said please check out www.wigsupport.com for everything wig related.

Note: counter-intuitively synthetic wigs can look/feel more natural than a human hair wig. Synthetics maintain their style when washed and are a lot less hassle. Recommend a synthetic to begin with. XXXX

I am finding it a great support linking in to this group, it just echoes so many of my feelings and anguish over this condition.
I am off to Canada tomorrow for three weeks, to see old friends and relations who I haven`t seen for well over fifteen years. I am longing to see them, but also have a horrible thought that they will notice my vanishing hairline and say nothing...should I be the first to mention it??

Hey Pam ! My advice for what it's worth - is stay cool and say nothing. They will prob not notice anyway. Wait until you are ready - don't be freaked out because you have a social 'do'. I still have told only family - and actually - they say they don't notice. No big deal for them ! I have cut my husband's hair since we met in 1969. We are now 63ish. I think he would be panicking if I were to say hmmmmmmm looks a bit thin on top ! But he is supportive, if a little weary of me searching in the mirror every day ! And so - Pam - enjoy your time with your friends and family - DO NOT TALK ABOUT IT UNTIL YOU HAVE TO !!!!!! XXXXX

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