Yes I am the Pam from the UK and a new member!
In reply to Liz, my dermatologist based in Bristol was reluctant to prescribe oral steroids, as he said the side effects were too great. He gave me a topical steroid cream, Synalar, to use at the front of my scalp around the affected area. I do not really think that it has been very effective though, as the hair is still receding, and the scalp looks shiny.
Any advice from other members welcome as to where to go for a good hair top piece in the UK?
Also, has anyone tried cover up masking products such as couvre, or toppik? What is their feedback?

PamW, yes it is a huge relief to have now been wearing wigs to work for 6 months and for it to be something I have incorporated into my daily regime. I don't wear wigs all the time. I use buffs mostly when I am not working and sometimes a scarf tied round my front hairline like a headband. I do of course want the hairloss to stop because the more hair I have the easier it is to just use buffs etc.. when I can get away with a casual look.

Pam (in the UK) you can get top hair pieces (toppers) from online wig stores int e UK but I would go to a wig salon and try a few on just in case you don't like the way you have to attach them; clips, glue, tape. I depends how much money you want to spend as to what top hair piece you go for. If you friend me on this site I can give you more details. XXX

Welcome Pam - sorry you have this awful FFA too. I can recommend eyebrow tattoos - they make such a difference ! x

In reply to Pam, I use Topik and another called Illusion which are tiny fibers that help to camouflage the thinned out areas of hair. Comes in a few color shades. However, since I wear bangs, I don't sprinkle it on directly at the front but it works for me where you part your hair.

In reply to Pam W., I go to see Dr. Goh this Thursday morning. I hope she will have some ideas for me. These new symptoms of fatigue and light-headedness just sort of crept up in the last 10 days or so. I have changed my diet...started wondering if I was allergic to gluten...so maybe I'm not eating enough, or maybe it is depression, I don't know. I see my therapist this afternoon and yesterday I went and had a bunch of blood work done, but won't have the results for a couple of days (I do see an endocrinologist every year to check for thyroid and other issues, but in the past everything has come back normal). Anyway, the whole thing is pretty stressful, especially trying to come up with enough energy to go go work every day and juggle all these doctor appts.

I am also thinking about buying a front hair piece, just in case this continues to get worse. I went to see a lady last week who makes pieces for people with cancer and alopecia with real hair. She custom makes them. It was a good, but weird experience...one that I never imagined I'd ever have.

I feel so depressing all the time. I have a big trip coming up in a couple of weeks, one I have been looking forward to for many years, and now I can't seem to even get excited about it with all this hair stuff going on.

Anyway, thank you all for listening. Maddy

I find that the best way to cope with this disease is to do three things (in addition to the medications, of course): focus on the blessing in life rather than what this disease is taking away from me, try not to stress too much about the little day to day things that come up and exercise as much as possible. I have found that my hair loss began and increases during times of stress. So I try to take things with a grain of salt and enjoy all that is going on around me. I have to tell you that this is a switch from my normal personality. I am very type A and giving that up has not been easy. And some days I fall back into my old ways. It is my opinion that I actually benefit more from positive thinking than the medications I am taking. However, it is my hope that a combination of both is the best course of action.

I also never give up hope that this disease will stop progressing sooner rather than later. My hairline has changed drastically, but I am still at a point where it is manageable. So, I am doing everything my doctor is telling me to do in terms of medication while continuing to think positively about my situation.

Finally, another gift I give myself is exercise. I think that exercise is the single most thing that causes our body to function better as a whole. Plus it really helps me to live a more stress free life.

I hope this helps others. It has taken me 3 years to get to this point, and it does seem to be working for me as I am back to being in a little remission. My eyebrows have filled in a bit as well in the past few months.

Thank you all for being here too. I don't know anyone else with this disease, and it has helped a bunch knowing you are out there and going through the same thing.

Christie I agree with you, I do keep busy so I'm not dwelling on my hair, I also excercise quite a bit, for 2 reasons really, I'm a cook and I love food so I eat too much,and since I started the menopause 6 years ago it made me feel better so I go at least 3 times a week. I also try not to get too stressed, so I arrange my life quite methodically, which annoys my husband as I'm not good at spontanous, but it keeps me on a level path!
I know I am feeling alot calmer now dealing with my hair loss than i was last year but we have all been through that panic stage of the unknown, how soon will it go, how far back is it going to recede, what am I going to look like, the list is endless. But I found, once I realised it wasn't all going to go quickly, I'm taking everything I can to slow the process and after 18months you still really can't tell I've got a problem, except on windy days,then slowly your life gets back to normaland its not the first thing you think of when you wake up! So hang in there I know its not great but

but your friends and family are the most important to you and they are still there for you.Just think if you had a friend who had ffa would your feelings change for them just because they have less hair! x

Jules, I think the research needs to be in finding out the cause of FFA - once they know the cause we can avoid that and the medical professionals can find a cure. I think the cause is something environmental because FFA did not happen historically so there is something in late 20thC and early 21stC living that is affecting us. Insecticides, hormones fed to cows to increase milk yield, sulphates in shampoos have all been mentioned by medics as possible triggers but I think the research needs to really nail the root cause first. XXX

Debs - I agree. I had an interesting chat with my GP the other day. We both felt though that there may not be just one trigger, that individuals are possibly just prone to having the immune system under attack. I do think that pesticides/household cleaning products/time of life/stress and so on are all factors here. Isolating a single cause I reckon may never happen. Treating the symptoms is all we sufferers now can hope for.
I think that the ideas that have been put forward in recent days, like PMA, exercise, diet and so on may really be the key rather than oral meds. I must say that since taking turmeric - I haven't needed to use dermovate/clobetasol in the mornings, just at night - just in case !!I am seeing Dr H next Thursday - not a trip I look forward to ! Heidi - what you said about FFA and the attitude of friends to this - is totally right in my view - but I can't bring myself to tell anyone yet. Your hair when I saw you looked amazing. I'm going to try the L'Oreal Everstrong shampoo and conditioner - I will get it from Amazon and one of you said it's sulphate free - got to be a good one ! XX

Celia, good luck next week with Dr Harries. I am pleased I am taking the turmeric supplements. I can't tell if they are helping my hair loss but they are very good anti-oxidants so taking turmeric is good for my general well being. I am very pleased that you are able to use the dermovate less. XXXXX

Celia & Debs- I have been taking 1 x 400mg of Tumeric per day, what strength are you using? It does say to take 3 @ day and I'm considering upping my daily amount. One can only hope it helps with the inflammation as it claims.

I am taking 2X400 tumeric.
Someone mentioned last month that she used Tryimeiclone on her
eyebrows and had good luck with them growing back, even though
they were a lighter color. Has anyone else tried Tryimeicione?
I have a prescription for it and am curious who else has tried it.
Thanks, Judy from San Diego

Well, I am back from my appointment with Dr. Goh in Santa Monica and wanted to give everyone an update. First, let me just say that my experience with Dr. Goh was very good. While my diagnosis hasn't changed, she is definitely taking a more aggressive approach to treatment compared to Dr. Strict. She did a round of steroid shots all around my scalp, told me to use the Clobetasol twice a day and put me on Doxycycline (100 mg. twice a day). She sat with me and answered all of my questions, and since she has alopecia herself, can relate to the whole emotional side of this equation. I go back in 8 weeks for another round of shots and to assess the effects of treatment.

I also spoke with her about the possibility of hair transplants with this type of alopecia, and she told me that it was definitely possible. She currently has two patients, both of whom she treated for a couple of years, was able to halt the progression, and who have had hair transplants. The first one, who had her transplants about 6 years ago, had all her hair grow back in but then did have a little "flare-up" about five years later and lost some it, but it is still much better than when she first came in. The second one had it done about 5 years ago, and so far, so good...but, of course, you never know what is to come. Anyway, that at least gave me a little hope that it is a possibility somewhere down the line.

Anyway, it has been a long and emotional day and I am now at work trying to forget about it for awhile. I so appreciate this group and being able to come here and have people who can relate and understand what I am going through. Thank you for all of your encouragement too!

Hi Pam, I don't have any itching and burning. I never have...I don't know why. The Clobetasol is just to try to get the inflammation down. She said Plaquenil is a possible second treatment option, but the Doxy was her first for me...again, not sure why. She did mention a couple of other drugs, including some really strong form of Propecia-like drug...but the FDA has not approved it for women or this particular condition...yet. I was not sure about the name of it. She did mention a couple of other possibilities to try if this course doesn't work....but, again, I didn't get all of the names of the drugs. She did not mention "Actos" by brand name that I recall.

Hey everyone. Sorry I've been AFK, but it's good to be back and see others' postings.

As for me, still wearing a wig full time. I'm pretty much used to it. Looking forward to going through all the posts since the last time I was here. Best to all of you!

MADDY, thanks so much for your post. This is the first time I have heard any doctor categorically say they have managed to stop hairloss in any patients. The fact the Dr Goh is an alopecian herself means she really understands the impact of FFA on us all.

RITA, I take turmeric extra supplements, 2 capsules a day ; turmeric 400mg. I have traweled the internet trying to find the optimium dose for taking turmeric supplements but since doctors don't prescirbe this spice you can't really get a definitive answer. There are other natural anti-inflammatories like ginger, bromelain, black pepper. The supplement I take also includes these. I guess if we take turmeric and some of these others we will cover all bases.

LACE, hello nice to see you back. How is your wig holding out? I am changing my Jon Reanu's about every 4 months but my hairdresser is great she is extending their life by cutting about half an inch off the bottom when the fibre starts to get a bit rough and the wig is good as new so I reckon I can wear one for about 6 months in the future.

Thanks so much Judy and Debs re the Tumeric info. My dermatolgist did not do a biopsy and just told me I have FFA. I wonder why I didn't have this test. Several people mention they have Lichen Planiplaris & Cicatricial & Scarring Alopecia & can not figure out if they are all one and the same even though I've tried to pin this down on the internet. Does anyone know?
Also, I have enlisted the help of a naturpath who is adamant about the effect that a Grain Free (Paleo) diet has on any body inflammation. Even though I am willing to try anything to save my thinning hair, I am having a difficult time staying with it.

Yes, I asked Dr Harries about the effect of gluten and he said there is no evidence that it helps.... that said, if other people are having success with a gluten free diet then we have to listen to our bodies. I have not eliminated anything from my diet, I eat healthily anyway so I will carry on as usual.

I have colored my hair for over 50 yrs. and and wonder if this may have contributed to FFA. I am curious as to whether many of us have done so?? Obviously, it wouldn't be the sole reason but perhaps one of.
Also, has anyone tried acupuncture as it claims stimulation of the blood to the scalp area?

On Nov 27th 2012 CJ - you wrote that you are on Finasteride. Are you still on this ? If so - any good things about it's effect ? Is that what you are now on, Liz ?

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