Hi everyone. I've just seen on the internet that as well as the Dermatology Conference there will also be the 7th World Congress for Hair Research held in May this year in Edinburgh. It looks like Dr. Harries will be speaking at both events. Wouldn't it be great if some new treatment for FFA came out as a result of these meetings?

Celia, I went to the Belgravia Clinic in London to get a second opinion and one of their trichologists knew I had FFA literally as soon as I walked in the door.

I am very pleased Dr Harries is speaking at Edinburgh, when I saw him in February I had some photos taken - just of my scalp nothing that could identify me for his research... maybe I will be famous now he might use a photo of my poor head during his lecture!!!

Happy Easter to you all.

Jules - I just want to comment on the steroid injections. I seem to be one of the few that have reported some regrowth on my front hairline and temples, none on the eyebrows yet. At the time of the regrowth, the treatment plan was the steroid injections, rotating between DHS Zinc Shampoo and Head & Shoulders Classic Clean shampoo, using Free & Clear Conditioner and Free & Clear Hairspray. I didn't get the indentations until I think my 3rd round of injections. In my case I think it depends on who does them as to whether I get dents or not. My Derm is at a teaching hospital so you have residents that do them sometimes. I have one in the middle of my forehead along the hairline that isn't going away, otherwise the rest are slowly disappearing. Luckily my hair covers it yet.
The key though is to catch things before the hair follicles are blocked/scarred and only the Dr's might know when that is.

Jules, How often do you shampoo your hair? I'm confused about whether it's better to do as little as possible to one's hair or wash it every day. My hair is quite dry, so doesn't need frequent shampooing, but I've also read that one of the theories of FFA is that toxic lipids build up in the hair follicles.

I've been wondering how often to wash my hair as well. Any advice would be very welcome. Like Alice, my hair is quite dry, very fine and fly-away. I've been colouring it for years. I have been used to washing it twice a week with a shampoo for coloured hair and then a conditioner. At my last appointment my derm gave me no advice on how often to wash it or what products to use, but to be fair, I never asked him! I've been reading other people's posts and what their derms suggest and anti-fungal shampoos such as 'Head & Shoulders' which contains zinc pyrithione or 'Nizoral', which contains Ketoconazole are recommended. I have never had an itchy, flaky scalp or dandruff so I've never used either of these, but I've had some red spots on my scalp recently, and now I know what to look for, I can see that the follicles are showing signs of inflammation near the hairline. I've been using Dermovate which my derm prescribed, which clear up the spots very quickly but new ones reappear after two or three days. I bought some 'Head & Shoulders' today. Out of the blue about three years ago, having never had any skin problems before, I developed Rosacea on my cheeks and nose. My GP prescibed an anti-fungal gel called Metronidazole. I believe Rosacea and LPP are linked, if I am right in saying?

Here is the link to an article about FFA that mentions the toxic lipid theory. I found it on the CARF website, under the Research tab.
http://www.carfintl.org/assets/docs/articles/Drugs%20in%20Dermatolo...
Just what I needed to hear - that I have a headful of poison fat! It doesn't indicate whether it can be improved by frequent washing.

Pam, thanks for your usual fantastic explanation.

Happy Easter everyone! Pam I can see why you are a teacher, you explain things so easily, I'm the complete opposite, I make the most simple things sound complicated!! I'm finding it so hard to keep up with the conversations, I don't look on the forum for a few days and then have to read 4 pages of update myself! I can't beleive there are 52 members now, WOW! I think when I joined there was a handful of us.
Thanks for the phone number Debs I will ring them on Tuesday to ask for the survey. I'm a bit like you Debs regarding your attitude towards FFA, when I was diagnosed I was really down I can't tell you how low I felt, I cried all the time and felt ugly and so helpless. But now that I know its not falling out in handfuls and I'm not going to wake up in the morning with my hair left on my pillow, then to have found this forumn, this has become my therapy. I have someone to talk to no matter what time of day it is and having such a large group from all over the world gives me confidence that I am doing everything possible and I have the most up to date advise, more so than my own GP. I have become much calmer about my condition and it doesn't take over my life, its always there, but its not what I wake up to.
Jodie I used to smoke, but I gave up 6 years ago when I started going through early menopause at 43 years old! So wouldn't I have FFA if I was still smoking, I hope this is not correct as I would start again tomorrow!!!
CJ regarding approaching strangers, I go to a gym class and there was a lady there who obviously has alopicia and doesn't really hide it, but it was when I was feeling down last year, so I thought I would approach her to see if there were any support groups in the area. So after a couple of weeks of smiling at her, or saying hello if the chance came up I plucked up the courage to say something. I waited until we were outside and on our own and just said to her 'hello my name is Heidi and I was wandering do you have alopicia as I have just been diagnosed with FFA which means I will loose the front part of my hair, and I'm struggling to cope and I was wandering if there was any support groups in this area that I could go to? Wether she was embarassed that I had bought it up or just found it differcult to talk to me she just said ' no there isn't!' and walked off!!! I felt worse and rejected from a someone who was also sufferering and went home and cried in the shower! So beware that you might be not be welcomed with open arms!!!

Thanks, Pam, for that excellent explanation. It made things a lot clearer for me and I'm grateful to you.
My sympathy to Heidi who made an approach to someone and was snubbed. I think you were brave to talk to that other lady, Heidi, and I'm sorry she didn't respond well to you. I often see someone in my town who I am certain has FFA but have never felt confident enough to speak to her so I admire you for at least trying to reach out.
Happy Easter.

HI all,
Thanks Pam for the great explanation- it makes me want to find out more about Actos.
As for approaching people....I expect that most people would feel uncomfortable being approached.. because its a confirmation of their worst fears.. that others notice their hair loss. By saying something we confirm that whatever they are doing to mask or hide the situation, its not working. I have said to the folks I have talked to something like what Heidi said, but started out with... "I have a hair condition, called FFA, recently diagnosed and I find myself hyer-aware of everyone's hair line, which is why I noticed yours.. which most people wouldn't notice at all, and I could be wrong, but...have you got a good doctor you are seeing for your hair condition..?

anyhow.. this went over well, both times I tried...

Thanks, Ellen, for posting the link to the article on LPP & toxic lipids. Although much of it was too technical for me, I did notice that it mentioned 'decreased sebaceous activity'. Now that I think about it, I did notice that my hair being very dry quite some time before I noticed the hair loss. Does anyone else recall this happening?

I have dry hair. Very fine but lots of it (before this) and it's always been dry. Now the hair that I have left is drier than ever and is feels very different to how it was before. It's thinner, whispy and sticks up and out like a dolls hair.
Does anyone has other areas of thier body that are inflammed in some way? I have quite red skin on my feet which I've had for years. When I take the Doxycyline the redness goes. I also have Gall stones which cause inflamation.
Also why is it that it's only the front of the hair and sides that we lose. What is different about the hair that grows there?
And lastly :o) When are we going to arrnge a meeting?
x

Liz,
I think the inflammation approach is significant. I have psoriasis on my feet ( inflammatory condition) Lichen sclerosis and Atrophy ( inflammatory condition), digestive issues like IBS ( maybe inflammatory .. who knows) and some version of dermatitis (- also inflammatory). I have done two months of gluten free to see if it might help..no such luck. but I am convinced that there must be a connection to all these inflammatory conditions roaming around in my body. that said, Plaquenil didn't work for me - just gave me chronic stomach upset.

Hi, Paula. I am not a doctor (only a grade school teacher), but my understanding is that we all have LPP. FFA is a type of LPP in that the hair loss follows a pattern. FFA is characterized by hair loss at the front hair line, temple and nape of neck. It is a band of hair loss and is common in post menopausal women. Women also lose their eyebrows and other body hair (underarm, forearms and legs). I have had two sisters take prednisone and I know from their experience, it can cause hair loss, so if you feel that you are losing a lot of hair it could be because of that drug. You might want to get back to your doctor and tell them what you are experiencing. The drug, Plaquenil, that I am on, takes almost 6 months before people can tell if it is working or not. In the meantime, my doctor prescribed an antibiotic, doxycycline, that helps to reduce inflammation, which also helps with skin conditions like rosacea. My scalp is still inflammed and I have been taking plaquenil for 8 months. I am going to my specialist on Friday, and I am going to ask if there is something else out there for me.

Celia, don't apologize for having a bad day. We all know how you feel.

Ellen, where is Dr. M in California?

SAMMI - as you have been seeing Dr Harries for 2 years you are well ahead of the rest of us in the UK that having only been seeing him for a few months... Can I please ask you to post what treatment you have received ? and any side effects and whether it worked ? Any info we share with each other really helps us to make informed decisions about what we are prepared to try. Thanks you.

Hi everyone, Ive been keeping up to date with recent posts. All very informative. Glad to say I have not had any stomach irritation since I changed from the generic hydroxychloroquine to Planquenil.
Hi Ellen, interesting that you have Rosacea and eczema, both of which I suffer from. I also have Vitiligo.
I can't style my hair properly any more so I've bought a wig and I had it cut yesterday. Then I wore it to the shops. I was very nervous and kept checking myself whenever I came across a mirror! No-one gave me any funny looks so I guess it looked OK. It was very windy out and I was really worried it would blow off! Managed to get back to the car without misshap! Fed up with spending ages trying to pencil in my eyebrows to make them look natural. As luck would have it, there is someone local to me who is an expert in semi-permanent makeup so I'm going to take the plunge and have eyebrow micropigmentation. I've booked an appointment for next week.

Pam, thank you very much for all your information. My dermatologist says she will prescribe plaquenil for me when I next see her so I am glad to hear as much as possible about other people's experience of taking this medication. I intend to ask my dermatologist how many people she has prescribed plaquenil for FFA and what the success rate has been. Good luck with your treatment!
Caro, it was good to hear about your first experience as a wig wearer. I'm getting my first wig next week and I feel a bit apprehensive. I was worried about the possibility of it blowing off on a windy day but you said yours stayed on ok. It does feel like finally accepting that I need to wear a wig is a big step but what you experienced seems reassuring. Thanks for sharing. I bet you felt nervous stepping out to the shops wearing one for the first time. I'm sure nobody noticed and you looked great, though. Did you wear a full wig or a hair piece? How comfortable was it?

That's really useful info Debs. Thanks! Will check out both sites.
Kath, good luck with your new wig. Mine is a lace front and synthetic so it's lighter than human hair. Even so, before it was cut it was too thick and felt heavy on my head. Probably because my own hair is so fine and thin it felt strange, like wearing a hat. Since it's been properly cut it feels a lot lighter and more comfortable. Re the chance of it blowing off in the wind (!) the stylist said I could have a clip sewn into the lining near the base to clip to my own hair at the back which would help me feel more secure when wearing it. She showed me what the clip looked like and where it would be attached. My hair has not been affected at the back of my head. Anyway, for now I've decided to try wearing it without having the clip and see how I get on. I went for synthetic hair because the colour will not fade when washed. It is a pretty good match for my own hairt, which is coloured anyway. Mine wig also be heat styled on a low heat, though I haven't tried that yet.
Really exited about having my eyebrows done (by Noveau Contour). Have to do a patch test first to make sure I have no reaction to the dyes used. I'm going to go for the hairstroke brows as I want a natural look and I have very fair skin so I don't want anything too dark which will not suit me.

I have been going to the University of Colorado for my FFA. First they put me on Minocycline and Griseofulvin for six weeks. The only symptoms I had were hair shedding, no inflammation, no itching, no burning. The only thing is Griseofulvin is hard on the liver. I decided I did not want to take it and have the chance my liver gets damaged. All my problems started after prescription drugs anyway. Last visit to the doc they started me on Spironolactone and Avodart (?) like Propecia. He said a recent study at Duke University used this regimen with good results. My question to all of you is can you see your hair follicles in the hair loss area? I can't see how taking these meds can regrow hair if there are no follicles, which I don't have. I hate taking prescription meds, I have had 6 different diagnoses since this all started, so I don't know who to believe any more. I will let you know if I start the new meds and if they work. I feel great and I hate to have any side effects. Do you all have scalp symptoms like itching and burning? I did for about three months, then I took doxycycline for about 3 months and it all went away.

Hi. Does anyone know if perming or dyeing hair makes any difference to the hair loss? I ask becuse I was thinking that I might just do something a bit funky with the hair I have whilst I still can so I think I might perm it and dye bits of it. I have no irritation which is good.
Celia, thanks for you email. How do i access it on this site so that I can reply?
xx

Debs, thanks for the 'wig support' website info. That was a great help and I'll look that site up now. Getting my first wig next week (if it is ready) so I appreciate any hints and tips.
Caro, thanks for your info. too. Like you, I'm getting a synthetic wig (I was told that I had a limited choice on the NHS - which is fair enough. I'm happy that I'm being given a free wig!). I don't know how things work in your NHS area but it seems I can't use my wig allocation as part of the payment for a more expensive wig. The one I've chosen seems OK and I'm going to give it a try and see how it looks and feels to wear. If I'm not happy with it then I will pay for a more expensive one myself.

Pam I'll change my profile photo once I've had my eyebrows done, and be sure to be wearing the wig as well! There is a new me on the way! I tell myself to think possitively. My hair is progressively getting thinner and hairline still receeding but when I put on my wig, I see the old me looking back - well not so old, in fact I look years younger so that has to be good!
I've been looking at Patti's Pearls site - great advice on there, especially about how to make sure a wig stays secure using double sided tape. Thanks Debs.
Michelle, So sorry about your hair loss. In answer to your question I have no follicles visible in the areas where my hair has been lost. They have scarred over. I have about an inch of completely smooth white skin where my hairline originally was. The LLP is still very much active and my hair follicles are inflammed at the hairline and about an inch back from it at the front of my head. I'm taking Planquenil but realistically I don't expect to see any improvement in my condition for many months and maybe not at all. I've been prescribed Dermovate scalp lotion to use for the inflammation. I have never had any scalp irritation or burning like some other people have described.
Liz, personally I would advise against perming because of the chemicals used in the process but hair colouring is fine as long as ammonia is not used. My derm told me I could carry on having my hair coloured.
Enjoy the rest of the weekend everyone - the sun is out here in the UK for a change!

Caro, I'm having my eyebrows done next week and I am soo excited. The thought of not having to put them on every morning will be so nice, not to mention going camping and stuff like that. I know what you mean when I put my wig on, it takes years off. My son said I looked 35 when I wore my red one. My hair is usually brown and when I wear the red one that is very similar to my style, everyone says I love your hair color. I'm thankful there are cute wigs out there! I love the fact that they are all highlighted now, you just can't tell they are wigs. I get more compliments when I have my wigs on than I did with my bio hair.

I have resigned to the fact that nothing is going to help my hair grow back, except by the grace of God! I've just got to move on from going from doc to doc. I'm at peace with it actually. I'm not losing my hair because of chemo or anything. I'm not going to take Rx that might injure my organs. I have read many times that your body will take care of LP on its own, in due time. Might take years though. Peace to all!

Ellen, no I have not taken accutane. I have not taken any medication at all apart from antibiotics a couple of times for childhood illnesses and I have used the contraceptive pill a few times in my life but not more overall than about 5 years in total. I don't think my FFA is related to any medication I have taken.

Hi ladies,
I have been on Plaquenil 2 years and had liver function and other blood tests done by my specialist prior to going onto Plaquenil. I currently see her twice a year, have an eye test once a year but at this stage she hasn't repeated any blood tests although my GP generally has me do blood tests once a year as normal practice. I recall the specialist telling me originally that information she has read indicated impact on eyes generally only occurs after using Plaquenil for 5yrs or more - and even then that's not with everyone. I have an appointment in early May with her so I'll check then her thoughts about blood tests & eye tests again. As we have discussed before I think there is a lot of difference of opinion due to there not being much research to date for specialists to work with.

There must be an established best practice protocol for checking liver function in patients on plaquenil, it is not a new drug and people have been taking it for a number of years for other medical conditions. I have my second appointment next Friday with Dr Harries, I will chase it up my end too. Surely the drug manufacturers must give guidance on it's usage to the medical profession. I know that it is common to take palquenil for many years with other conditions, so I am not too concerned at taking it for the relatively short period that FFA requires. However, I do want to keep myself safe. On a lighter note, I have discovered 'buffs' I have ordered 4 off the internet and am going to use them in the gym and on the beach when I go on hols next month, they are so comfy and you can make them into headbands, bandanas and all sorts.

Hi Paula. I see Dr Harries every 3 months. I travel up from Brighton. I see him because he is the nicest consultant I have seen. Although he doesn't necessarly offer anything different from other consultants, he cares, is attentive and makes me feel that I am not been rushed. For me it is not just the information I am given on FFA that is important, it is the way that information is given.
x

Paula, I agree 100% with Liz. I have to travel from London to Manchester to see Dr Harries but it is worth it for the reassurance that I get being treated by him.