Hi everyone, you have all been so busy its hard to keep up with all the conversations!
Sandy i have registered to the survey, I don't know if they will take me as I'm in the uk, but I'm sure my doctors will confirm the diagnosis!
Debs could I complete one of Dr Harries surveys as I'm not registered with him although I have had contact with him?
Its good to know there is some interest in this disease!

Rebecca, that was very interesting about your specialist in Berlin saying he reckoned he got a 50% success rate with plaquenil. My dermatologist didn't give me any indication of success rate, she just said it would help the inflamation so it's good to get some idea of the possibility of success, even if it is only one doctor's opinion.
It's worrying that your local dermatologist may have given you the steroid shots in what was apparently the wrong place because as a patient you have to trust that your doctor is doing the right thing for you.
I hope your next lot of steroid injections work for you.

Heidi, as you have been diagnosed with FFA by a doctor in the UK I would suggest you ring Dr Harries receptionist to get a message to him and ask if you can do the study, if you give her your details she can action this and pop a survey in the post to you if he agrees 0161 206 1012.

Rebecca, so sorry you have been through all those shots for no reason, very good news though that the plaqeunil has a 50% success rate and also that your derm in Berlin says that steroids (in the right place) can help. I think you should take photos of your scalp where this doctor injected in error and see if you can get some compensation from the health authority. Good luck with your treatment from now on.

Rebecca I've just read your post. Very sorry to learn of your bad experience with the steroid injections. As your specialist said, once hair follicles have been scarred there is no possibility of hair regrowth from these areas. All that can be done is to try to reduce any inflammation in the remaining hair follicles. I am taking Planquenil and while I know that it may not work, I am encouraged by the knowledge that there is a 50% sucess rate. Rebecca I do hope your skin recovers in time and all the best for your further treatment.

Hi everybody -
Chrisy - My doctor told me to stop using the desonide on my eyebrows because I have been using it for about 7 months, he didn't want to put me at risk for cataracts. I believe it has minimally worked for me (eyerows) as well as the shots - but at the moment, my dermatologist
has stopped the shots as well. My skin has thinned and has become rather dented, At the moment, I am taking 100 mg of doxycyc 2x/day and the 200 mg plaquenel 2x/day. I also put 5% minoxidil 2x/day on eyebrows and behind hairline and hydrocortisone butyrate topical solution behind the hairline 2x/day. Mentally, I feel better about stopping the shots and the desonide - at least for the time being. I think that this regimen has kept the hairloss at bay and some hair on the temple region came back as well as a little eyebrow hair. I see a dermotologist in the clinic in one month and the very specialized hair dermatologist in 4 months.

Regarding my eyebrows, I am taking Celia's advice and looking into tattoos. I thank everyone for their input.

I emailed Wake Forest and put my name on the list. I heard back from them - it hasn't started but they asked me for my info.

STEROID INJECTIONS - has anyone that has used the steriod injections on the scalp had indentations that have now filled out and healed. Lots of ladies are reporting dents and marks on their skin after these shots - but do these dents go away after a few months??? I asked Dr Harries and he said it can take several months for the dents to heal but I would like confirmation from ladies that have used them. And OMG we now have 50 ladies in this group - we can reassure ourselves we are accessing info from all over the world in this condition.

Hi Debs. Can anyone put a picture of thier indentations online? Only I have an indentation caused by the condidtion itself. I'd just like to compare the 2 :o)
x

I think to be honest I was very down all of 2012 because of this diagnosis, it has taken me a full year to feel in anyway like my normal self again. I have been using this group and the Alopeica UK forum to hold things together and now I am seeing Dr Harries I feel much more relaxed, I can now feel that I am doing everything possible and I can't expect any more of myself. I am trying to be kind to myself. I am giving myself more time, I have resigned from some of the voluntry work I usually do, I am not studying for any qualifications and I am just doing my salaried job (which is part time) and having plenty of lunches/theatre trips etc.. to perk myself up. It is tough having this condition and I think in some ways I have to take it one week at a time but I do feel a great deal better than in 2012.

It's great that you are feeling better Debs. It does take time to come to terms with having this condition. I've become hair obsessed since having FFA which is weird because I wasn't when I had more hair! Yesterday I had exam practice which was infront of a camera. Not only was it in front of a camera but I also was able to watch myself. All I could focus on was my shiny balding head. Anyway, next week I shall wear a headscarf.
Good news today that I managed to get a prescription for Minoxidil from my GP. Dr Harries didn't think I could get it prescribed but I did and also managed to get the 5% strength. Fingers crossed it helps.
Hi Jodie :o) The conference in Edinburgh sounds interesting. Can we go to it?
xx

Hi everyone, I wanted to comment on the steroid injections. When I first went to a dermatologist in Jan 2011 it was because of having a very dry, itchy scalp and I thought it was dermatitis or scalp psoriasis. I first tried Dermasmoothe oil treatment - very messy, and then clobetasol topical liquid and clobetasol shampoo. This helped my scalp. Then I noticed a strip of hair along the back of my neck had fallen out - my forehead and temples were okay at this time. My doctor started giving me the steroid injections to the front of my scalp along the hairline and temples. I had these every 6 weeks for a few months. My hair must have been thinning then but I didn't really notice. After the 5th round of shots I didn't see any improvement and realized my insurance wasn't covering the shots so I stopped getting them, and my itchy scalp was improved so I didn't go to the dr for a while. That fall I noticed my hair at the temples pulling out with hardly any effort and seeing round patches of hair loss on my forehead. I was going through a lot of stress at the time. I was worried about the cost of treatments, but eventually went back to the derm in Feb 2012 with lots of hair loss in my front and temples, got a biopsy and diagnosed with FFA in March 2012. Derm said there was nothing to help since the follicles were dead, and didn't recommend any further treatment. He said there were some RX drugs but didn't recommend them because of side effects. He'd only seen a few women with this problem. So I my opinion the shots I got didn't help as I got them prior to the hair loss and didn't stop it. They were painful, but not terrible and I don't notice any dents, but it has been over a year and a half since then. So now a year later, I've had no treatment other than using T-Gel shampoo to help my scalp, and my hairline has receded quite a bit but seems to be staying the same for now. I do keep thinking about going to a different Derm for a 2nd opinion to see if there's anything I can do to keep the hair I still have. - whether Rx or Rogaine. Sorry this is so long! Karen - Iowa

I hope my derm is going to the conference. I'll ask him at my next appointment. I suspect there may be many more women with this condition who remain undiagnosed. We are all pro-active on this forum and have sought help from our doctors and either been referred by them or asked to be referred to a specialist. In my case part-way through last year I realised something was not right with my hair. (At this point I had never heard of LPP or FFA. I thought I had Androgenic Alopecia). I researched on line for a local consultant dermatologist who specialised in hair loss and then I went to my GP and asked her to refer me to him.
Liz I'm interested that Dr Harries has prescribed you Minoxidil. I asked my derm about using this on the crown of my head where the hair is thinning. He said that the hair on the top of my head was being lost due to LPP and therefore Minoxidil would have no effect. Some derms are prescribing Minoxidil as an additional treatment and some are not. It is very confusing!

Hi Caro. Dr Harries told me that the thinning hair on the top of my head is due to female pattern baldness and that although the FFA and thinning are sometimes seen together they are seperate issues. It'll be interesting to see if it has any effect. I'll probably just absorb it in to my scalp and grow a fine moustache and a couple of sideburns!
xx

Hi everyone. I'm near Edinburgh and my dermatologist is based in Edinburgh Royal Infirmary (Dermatology Dept.) I'll ask her about the conference when I next see her (beginning of May) - maybe she'll go to it. When I last saw her she did say that derms were seeing 'quite a few people with this problem' though when I first saw a derm (about five years ago) he said it was a 'very rare condition'. I wonder if a lot more people are getting FFA or if it has just not been reported in the past (especially by older ladies who might have thought, as I did at first, that it was just part of the menopause or ageing generally.)
I have never been offered steroid shots, by the way. The only drug I was offered in the past was ciclosporin - which I refused because of possible side-effects. I've had FFA for about eight years but wasn't diagnosed until five years ago (diagnosed as Lichen Planus at the time). Nobody seemed to know much about it then and most of what I learned came from researching it myself on the internet. The latest derm I've seen has suggested hydroxychloroquine. I've lost a lot of hair from my forehead and am at the stage of investigating wigs. In my health board area we can have up to 4 modal/acrylic wigs free a year but I will look at natural hair wigs too as I think they look so much better. I won't get one of them unless I pay for it myself, however.
Good luck to all you ladies out there with your treatments.
I think this support group is great. It's reassuring to feel that you're not the only one in the world with this problem!

Jodie, I think quite a few derms have incorrect ideas frankly about FFA not affecting women from black/Asian heritage, I know of 2 other black women apart from myself with FFA and I think Asian women would be just as likely to be affected by FFA. If a derm hasn't seen someone from a minority group with FFA they seem to think we don't exist, this is a worry because it is not at all scientific in their approach to FFA. I have seen quite a lot of Asian women with other types of alopecia over the years and I have a feeling that for various cultural reasons they might not be inclined to seek medical assistance. I don't smoke and have never smoked. I have also mentioned before on this site that I have seen quite a few women in supermarkets and out and about with what looks like FFA, I am convinced it is quite a common type of hair loss these days and just very much under-reported as well as undiagnosed, my GP didn't know about FFA, I was diagnosed when I went to a private hair loss clinic in London for a second opinion. This meeting in Edinburgh is great news. I would also like to attend if it is something that is open to the public. Lets hope that if these derms are comparing notes we will get a more effective protocol for treatment.

"Christine from Ottawa Canada,
HI Ladies, I've been absent for the last while - in part too busy with work and in part.. taking an FFA break. I'm not on any systemic meds at the moment and am not super at applying stuff at night either... my scalp is itchy and sensitive ( I also have LPP).
I wanted to comment on how/if we should approach people we see with hair loss... question.. if someone had approached you before you were diagnosed and gently suggested you get your scalp checked out.. even if you had been offended for a moment or two.. wouldn't it have made you think.. wouldn't it have made you go and see a doctor? Ultimately, even if you might have had mixed feelings about a 'stranger' approaching you, wouldn't you have , (especially if the diagnosis was FFA and you could save some hair) inwardly thanked that person for their consideration. I challenge us all to get past our own awkwardness and fear, and reach out to those who are dealing with hair loss, and encourage them to go see a doctor and get a biopsy.
Its quite likely that like many skin diseases, ours is one that has an element of shame or embarrassment to it and so we are nervous to speak out about it.
I think we all know deep down that shame has no place here and that we are all merely people living with a particular disease, just like those who live with diabetes or high blood pressure - just ours is visible.
we improve things for ourselves and those yet to be diagnosed if we come out of the closet, we speak up and we reach out.
after all we are worth it!

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?