Some dogs, especially poodles, get a disease called sebaceous adenitis(SA) in which the sebaceous glands become inflamed, leading to progressive loss of hair and scaly skin. Some websites say that the hair grows back after treatment - dogs are more fortunate than us humans!

I have virtually no hair on my arms and legs. I think this went pretty quickly - not a gradual retreat like the hair on my head. Does anyone else agree? If so, it would be interesting to know Dr Harries thoughts about this.

Jules - yes I was trying the 5:2 fasting diet. I have not done it for the last two weeks as I've had a really bad cold and haven't felt up for it. I did see it being recommended in a newspaper, with the proviso that we should eat a healthy 2000 calories on the non-fasting days. I do really like it. I do put on weight very easily and find it easier to fast two days rather than be constantly watching what I eat. Who knows if it affects the FFA? Website is playing up again - can't see any 'Reply' boxes :-(

Can anyone else just pull thier hair out at the front? The doctor pulled a handfull out when I saw him and I didnt feel it. I guess thats how he assessed with the condition is active. I try to leave it well alone but this morning I had a little pull just to see and I can pull it out as easy as anything. Just from the front. The back and side behind my ears are stuck fast!

Hi Ladies, I have lost the hair on my arms and legs, it happened very quickly and to be honest I didn't really notice it until I saw the loss of head hair last December. Celia, the tattoo lady knows what you want.. a natural looking eyebrow, she is used to treating people with alopecia. You have a consultation when the do the treatment and they discuss at length the shape/colour etc you want. I bought some St Johns Wort about 10 days ago, I feel very anxious and wanted to try a natural route to help myself. I do find I wake up in the mornings and for a few seconds think I have just had a nightmare where I have imagined I am losing my hair... then reality dawns on me that it is real. I think this is the most difficult thing I have ever had to deal with in my life because it is happening in slow motion, other upsetting events have tended to be quick, like bereavements, whereas this FFA is very very drawn out. The lady I made contact with that I mentioned in my previous post (that was diagnosed in 2006) has used just about every treatment going and she unfortunately has had continued hair loss. I found a nice website yesterday in the USA, www.coveryourhead.com. I have ordered 5 nice wide headbands, I have headbands that are 3.5 inches but my front hairline had receeded pretty quicky in the last 3 months so I wanted to make sure I have even wider headbands at home to wear to the gym in case it all speeds up even more. I have a horror of being caught out and not having anything to cover my hairline with. I too am really interested to see what Dr Harries can tell the Celia, if he offers any other treatments we can all have a go at it. Have a good day ladies, I am making sure I still go to the gym to try and work off some of this angst. XXX

Celia, I have asked questions on a couple of other alopecia websites about plaquenil (anti-malarial drug). 2 ladies in the USA have said that they used anti-malarials and it did help the hairloss. Can you please run this past Dr Harries, also 1 lady said she used Vitamin H - Biotin - this was presecribed by her derm. Ta v much.

Mairi, I have lost most of my arm and leg hair, I haven't needed to wax my legs since last xmas( FFA has some benifits!)
Liz you can pull the hair out easily as the hair follicle is damaged, I can do the same to the odd eye brow hair that I've got left. They grow in a weird way, different directions and some not even on my brow!
Debs I've been on anti malarial tablets (Quinoric 'hydroxychloroquine Sulphate')since May. I've had no problems with taking it and I'm on it until Febuary when I next see the derm!

My hair has receded about 1 and a half inches since Christmas and another 1 and a half inches behind that has thinned. Also I have lost a lot from my temples and half of one eyebrow.

Thought I'd update my photo as the last one was taken 2 years ago,this was taken a month or so ago. Its only taken me 30 minutes!!!Jules as I have said before I noticed my hair was receeding in January and now mine has probably gone back 1 inch at the front but the side bits ( the bits where men receed each side of the fringe)has gone back alot further probably 2.5 inches. My fringe still covers it as long as there is no breeze as you can see by my new photo!

Question for Doctor Harries - In patients where he has seen the FFA burn out, how likely is it to return?

If anyone is worried about privacy on the Facebook page, perhaps its better to turn Notifications 'OFF' and just check out the page from time to time. If you leave yourself logged on to FB, as I often do on my ipad, people can (partially) see the FFA comments in the Notifications list.

Jules you don't need to get a custom made wig (unless you want to) an average size wig will fit 95% of people and you can loosen/tighten it to suit your head with little straps inside (ike a bra strap to get the picture but much smaller!) because we have a medical condtion we dont have to pay VAT - so online you can order and wig and ask for VAT to be knocked off.

Celia, another question for Dr Harries... a lot of us are using steroid lotions (dermaovate and betnovate etc.) is it safe for us to use steroid lotions for a long period of time? We all seem to have been given instructions by our derms as to how long to use them for. Many thanks xx

Hi all, I have a few comments to these discussions if I can figure out HOW to comment - I am new to this.
I was diagnosed with FAA 10 days ago and it seems I must have had this for some time. Loss of hair on legs and arms for many
years, loss of eyebrows 2 years, which really was upsetting. I kept asking my dr about it and she would say ... It was just part of getting old!!!! My hair loss is 1-2" and I was so ignorant about what was happening that I just ignored it.
2. My dermatologist put me on Hydroxychloride (anti-malarial) med and the steroid med, . I was very reluctant to take the Hydroxy.... because of the MANY MANY side effects but learned that the eye problems only come after long use. My dermatologist felt that it "might" stop the loss and was worth a try. Does anyone else take it and have they had side effects???
I have been sick (stomach related) for 10 days but decided to
keep on it for another week or two.
It is amazing how upsetting this is and how noone else thinks it is a big deal - there are so many emotions popping up!
3. I am supposed to swim for excercise but this also bothers me.
Does anyone else swim and how do you handle it??

Hi Judy, Welcome to the group. . . even though we wish it weren't so, this group is a great source for sharing and questions. Our experiences are all so similar and it helps to get a few answers. . . even if it isn't as definitive as we would all like. I was diagnosed through biopsy just about exactly a year ago. I felt sad, disappointed and numb—started with Minoxidil, Finestride and Clobetasol(steriods). The steroids were applied with injections and the solution.It may have slowed things a bit, but skin where I was applying the steroids got quite thin. My dermatologist was not as experienced with hair loss, I changed doctors in September to Dr. Barbosa who participated in the CARF symposium and has more experience treating cicatricial alopecias. She put me on Protopic anti-inflammatory cream as well as the Hyroxychloride. The Protopic has really diminished the redness and supposedly the hydroxychloride takes several months for to start working—so I'm waiting on that. I take it right before bed and try to have a small bit of food with it—like a 1/2 banana or alittle yogurt. So far I have only had one instance of nausea and it was taking on an empty stomach. Too early to tell if it is working.
I'm 57 and like you, didn't really pay much attention to the receding hairline but really noticed my eyebrows initially. Thought it was hormone - related so raised the query with my gynecologist. Her response. . . that's what they make eyebrow pencils for. Really. Anyway, the timing sounds exactly the same—about 2 years of eyebrow loss, no real redness or obvious follicle bumps, overall hair thinning and finally noticable receding hairline in photographs.So it has been a year of ups and downs. I style my hair with bangs now and even get compliments on my new style. So, I feel like I'm in a holding pattern now. . . I'm not as terrified.

My dermatologist told me to use the Clobestasol solution once/day or every other day. The scalp where I apply it immediately cleared up but now I can see how terrible\y thin that area is. Pam, my dermatologist is in Hillcrest and she has one another patient with this. She also said this usually affects women with diaabetes or postmenopauseal. She was suprised when I said I went thru that 30 years ago when I was 40.
Right now I am in Palm Desert and will try to find someone who "specializes" in FAA - Pam, I will interested to know what you think of your dr at UCSD>
Chris, I can't believe the comment your dr made-really professional. I guess they just don't know anything about this.
I think my dermatologist said 2 months also to see if it is working. She took lots of photos. The nausea is really bad and I am taking the 2 pills at night w/food. It comes and goes, and gets better if I keep something in my stomach every hour or so-like applesauce, rice, 7up, etc So much for the diet.
Two years ago, when the eyebrows started, I began taking Thyroid pills and biotin (vitamin) plus using biotin shampoo. Obviously
those things did not work.
Your comments are appreciated. Pam, my email is Jkeller39@aol.com

Chris, I also wear bangs, glad that is working for you. Because of that I probably did'nt notice the hairline. I started wearing them VERY long to cover the eyebrows - I am terrible at applying pencil - Now that I know what this is, I will look into the tatooing and finding someone who can do the individual lines so it looks more natural. In the meantime I have been using Clinique's eyebrow powder when the bangs get cut too short.

I am only taking 200 mg of Plaquinil once per day. Are you both taking a total of 400 mg per day?

The Protopic is alittle sticky as the base is like vaseline. But I only put it at my hairline where the redness exists around the follicles. I am looking into a compounded prescription with the tacrolimus in a Cetaphil lotion base. My derm wrote a script for it but I have yet to get a cost. Will let you know. . .

Interesting about the clobestasol - I also think my hair is thinning on the scalp but maybe it's an illusion? .... Because the redness is gone now. My dermatologist said to takke the 2 pills together - 400 mg total/day. I questioned that also but she stuck to the 2 together.

No, it really doesn't itch, only occasionally. I guess I am lucky. Thanks for the tip on Good Person. Are you happy with them (tatoos)?
Yesterday I bought a chubby eyebrow pencil from Clinque - I think I can learn to do it but what a PAIN!! (especially when I go out, forgetting that I didn't put it on!!!!)

What would be worse is if you only put one on!

True....... Recently, before I knew I had FAA, I visited my family and forgot my eye makeup --- my grandchildren were fascinated!! My grandson kept telling people "Look! my grandma doesn't have eyebrows!!"

Hi everyone. Celia, I hope Dr Harries is worth the trip. I've booked a travelodge for the night before my appt with him because it's quite early. The danger is that we pin too much hope on him. I'd be interested to know what he thinks about hair products - for styling or colouring. Should we avoid them or can he recommend any? Also, is there anything - such as supplements or particular foods - that might either aggravate the condition and be avoided, or help hair growth and be included in our diet? I'm just desparate to be doing something, anything! I'd dye my hair green if it helped!

Bold - but hairy.... sounds good to me!

Jules, I would like to hear about the effects of diet and other supplements as well. Although I don't know if it would help me regain hair, if it would make my existing hair stronger that would be good. Happy Thanksgiving to everyone from the US! I am thankful that I found this group and that we all have a place we can come and talk about this condition with others who understand. Have a good day!

Happy Thanksgiving from me also. Even though we all have this crummy condition there are so many things to be thankful for so I am forgetting FAA tomorrow except being thankful for this group and realizing there are other women having similiar feelings.
I too am interested in the nutrition question.

Rather belated Thanksgiving wishes to all of you celebrating today.
Celia - can you tell us where you found the new site that mentions Dr Harries?
Reading all your posts has been good for me as it makes me feel I am one of the more fortunate ones. I have no itching, flaking or redness, and I have lost only a small bit of one eyebrow. All I have is the loss of hair :-( and the characteristic pale skin. We have noted the variety of treatments we are getting, but I wonder if Dr Harries will have any ideas on why our symptoms vary so much also.

Hello All, Celia I am glad you are sorting out your brows, I will go along to this clinic in Chertsey when mine need a top up, had them done last November and they are still dark, have faded a little but it will be awhile before I need to touch them again. Went to a lovely Christmas fayre in London yesterday and had lunch. I wore a wig. My 2 girlfriends know about my FFA and saw me in a wig back in Sept. I wore a bob with a fringe, a Gisele Mayer, they both liked it. Nobody stared at me! A young woman working a a restaurant was wearing a very nice long wig herself, I knew because it was similar to a long wig I have purchased but my girlfriends had no idea she was in a wig and in fact my friend Sally commented on what lovely hair she had! Going to wear my wigs to several events in Dec to gain confiidence before going into them full time in Jan. Can't wait to hear Celia what Dr Harries says. Have a lovely week. Hope all the ladies in the USA had a fab thanksgiving. XX

Hi. Is Dr Harries a private doctor? I cant understand why I was prescribed 8 weeks of antibiotics and 8 weeks of steriods when I have no irritation. I stopped both early (although safely!)Would you tell Dr Harris about the possible heredity factor because my mum has FFA to. My mum has no eyebrows. I on the other hand have lost half of 1 eyebrow! Im thinking seriously about contacting Channel 4 and asking to appear on Embaressing Illneses. Myabe I'd get some answers, and then again maybe not!
xx

Hi everyone happy late Thanksgiving to our American friends!
Celia you say you are not sure of swallowing any medication, I just wanted you to know I have been taking my hydroxychloroquine sulphate 200mg since May with no problems what so ever, I take it with my breakfast and a multi vitamin! You have sounded a bit sad recently, keep your chin up, we all owe you a great deal by setting up this web site. Its a place we can come with questions and support. I hear the panic when people first join this group desperate for answers, confused, scared that all their hair is going to fall out! I know I was devestated I couldn't stop crying at first but now I am more excepting, I have tried everything and at the moment I'm ok ( I don't know how I'll feel next year when alot more will have gone!) I have got my hats for windy days, and I've got a few different hair bands if I'm desperate to keep my hair inplace.
There was one question that I would like you to ask Dr Harries 'has he had any luck in funding the data base for scarring alopicias, which he had talked about in his reply to me. I did reply to him by email but never had a reply back, perhaps I should have written instead.
Liz when i went to see my dermotologist the first time, my daughter came with me. It was one of the questions she asked him, he said FFA wasn't heredity, although other auto ammune diseases were. Also I went on the embaressing bodies website a few months ago and wrote on their wall regarding more info on FFA, I haven't had any reply though. Perhaps the more people who ask questions the more likely they would do a program on it! EVERYONE WRITE IN!!!!!

Where is Dr Harries based? The doctor I saw said FFA was his special interest but I dont believe him. I saw him in September and my next appointment is in June next year, so he will never know if the medication made any difference. I'm sure that Dr Hilary on Daybreak would be interested if I wrote to him. We must be interesting to someone :o)

I don't have his letter to hand but I think I'm right in saying it's
Salford Royal NHS Foundation Trust. My private appointment with a Dundee consultant cost £145 ( I wanted to bypass the long NHS waiting list in Aberdeen). I have to go back to see him on Monday 26 November, but now wondering if I will get anything more out of it - probably should have spent the money going to Manchester :-(

I guess that I have very little faith in the person (doctor) I saw. He saw me for no more than 15 minutes, prescribed 8 weeks of medication and then no follow up until next June. How on earth would he have any idea if the medication had worked? He also said 'Do you have trouble with your eyes?' to me and when I said yes, he said...'Well the meds can cause eye problems but it's rare'. I see no point in him mentioning it to me if there was no risk. There is a risk of death with most medications but it's so rare your not told, so why was this the first thing that he said to me....and so I have been left really no further forward than before I saw the doctor.
Sorry for this moan first thing in the morning!

Hi celia. Thanks for the advice. I shall look in to getting a refferal to Dr Harries. I'm planning on going to my local Alopecia meeting in a couple of weeks so may meet someone else with the condition. Enjoy your gym session :o)
x