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

Hi all. I've been thinking along the same lines about giving FFA a higher profile - perhaps writing to Good Housekeeping magazine (my mum subscribes). They run alot of articles about breast cancer - well this is also a female disease so should be pertinent to their audience. I've switched to Dermovate but the redness is not lessening and my hairline is very ragged. It really is horrible. I'm going to meditation classes but am finding it impossible to switch off the "monkey mind". Not sleeping much either. Has anyone else tried any relaxation techniques that have worked for them? It's only been about 5 weeks since diagnosis but feels like a lifetime. It's so reassuring to see all your comments, especially how devastated you feel since friends and family really can't see how frightening it is. Only last night, an old friend commented that she'd rather go grey than bald, "oops, sorry Jules!". I ask you........ Celia, when you swim, do you wear a swimming cap?

Has there been any evidence about the flu vaccine having an effect on FFA at all? Just wondered, since it's been mentioned a couple of times.

Maybe Dr Harries would like to see me and my mum as we both have it. So it's a rare condition ( I have it), even rarer in pre menopausal women ( I'm pre-menopausal) and not hereditry (my mum has it...Maybe I should feel 'Special' lol :o)
I wonder if there is a link between FFA and the hormones that are pumped in to animal products. Im a vegararian but I drink a lot of milk and I've read some awful stuff about the hormones in milk.

NHS website says the following - so others may be able to ask for vaccine. Having said that, I had the pneumonia vaccine last year.

We provide pneumonia vaccines for all those over 65 routinely and for those under 65 that have any of the following long term conditions:
Asthma and other chronic respiratory diseases
Diabetes Mellitis
Chronic heart disease
Chronic kidney disease
Liver disease
Neurological disease (eg stroke / TIA)
Immunosuppressed
Living in residential or nursing home

Hello to all, good afternoon.
I have FFA since 2008 and only discovered in 2010. When the dermatologist told me what had, I cried a lot and was very angry ... Why me? Right now, I am at a stage of acceptance (never can accept 100%).
Started by falling eyebrows 3 months after the death of my Father. I have made hydroxychloroquine twice and the main side effects I felt were the level of vision and weight loss (despite continuing with a normal diet and balanced).
Right now, I take vitamins and apply on the scalp minoxidil. In Portugal, except hydroxychloroquine, all medication is very expensive.
I try to live "one day at a time" and not think too much on the disease. Of course there are days when I look in the mirror and I don't like what I see ... But I have the unconditional support of my husband, which helps me a lot.
Byebye and good weekend!

Anabela, Good Afternoon from the US
I am glad you have the support of your husband. I have also had FAA for years but just diagnosed recently. It is "a hard pill to swallow" (extremely upsetting)! I also am taking the hydroxchoroquine - has it helped with your hair loss?

Hi Anabela. I was diagnosed with FFA in September of this year so Im still getting used to it(although I fear that I never will).
Can I ask everyone. Is your remaining hair different in texture than it once was? The hair that is left on the front and top of my head is thinner and a bit frizzy.

Celia, thank you for your support. All good words we hear when we suffer from this disease, act as a salve and give us encouragement.

Judy, good night from Portugal. Thanks for your words. When I take hydroxychloroquine, slows the fall. The same happens when I'm calm and relaxed. When I get stressed and depressed, the hair falls again. I take vitamins every day for hair, to keep strong to cover the flaws of the head. I wash the hair with a mild shampoo for frequent use.

Hello Liz, good night.
My hair is now a little thinner, but I do not feel crisp. Do you feel inflammation of the scalp, followed by a slight scaling and fall? I never had inflammation or scaling but dropped me in it. Are you taking hydroxychloroquine? I'm also in premenopausal women.

Hello Celia.
There is one thing I would like to know and that no derrmatologista replied today:
- "What is the duration of the disease, from the beginning to the end of the fall"?
Thanks for the sympathy and kindness.

Anabela, I agree that trying to be calmer and less stresed helps. The internet keeps recommends: Sleep, Good diet, excercise and LESS STRESS. Of course that is recommended for eaverything. My dermatologist said FAA usually happenned to post-menopausal women??

Liz, my hair is also getting thinner but not frizzy

Anyone have eyelashes getting thinner???

Celia, if you are still home my question is about shampoos-
It seems to me that shampoo would be a major treatment.
Good luck on your trip and many thanks for representing us.

Celia, good luck on Thursday. Thank you for taking our questions with you to Dr Harries. I hope you are given something to help you with FFA. Thinking of you. XXXX

Celia, good luck to you on Thursday! Wishing you all the best. One thing that I find amazing is that there are 20 members in this group and there aren't two of us who are getting the same treatment. Some doing nothing, some using clobestasol, some on plaquenil, some using minoxidyl, some taking finestaride, some on prednizone. No wonder we can't figure out what works and what doesn't! I am seeing a new dermatologist at UCSD on Friday morning. It will be interesting to compare what he says with what Dr. Harries says. In any event, can't wait to hear from you Celia!

I agree totally with you Pam, we are all on different medication and even when we have the same drug we are being given different instructions on how often to use it... Look fowards to hearing from yourself and Celia and see if there can be some definitive treatment plans for us all to follow. Best of luck to you Pam & Celia. XX

Celia and Pam just a quick note to wish you both a sucessful or informative meetings with your doctors. We are all looking forward to hearing any new revelations, although I think us as a group are quite knowledgable on FFA, and fast becoming experts ourselves!!! Best of luck we will be thinking of you!x

Like everyone else, looking forward to what you and Pam can find out for us. All the best for tomorrow, Celia - hope it goes well.

All the best for tomorrow Celia xx

Good luck to you tomorrow Celia, hope you get all your questions answered. It will be great for all of us to hear what your doctor says. And Good luck to Pam also. I often wonder about how many women have this condition but don't know what it is and can't afford to go to the doctor for a proper diagnosis. We have fairly good insurance but my insurance company wouldn't pay for some of my treatment -cortisone injections- saying that it was cosmetic - and not a medical procedure. So having hair is not medically necessary, apparently. That really made me angry. I'll bet there are a lot more women suffering from this than we realize. And since most doctors have never heard of it, they aren't getting any help. very sad.

I had an appointment this morning with a dermatologist at UCSD. He has treatd patients with this disease before. Basically, we know everything. He really didn't add to my understanding of the disease. It is an auto-immune disorder and plaquenil is the best treatment option because it has the least side effects. The other drugs have harsher side effects. There is no way to recover the hair lost. The hope is to minimize the itching and burning and scalp discomfort with Clobestasol foam and the plaquenil. Even if you can manage the itching and burning, you may still lose hair. Plaquenil doesn't work for everyone. He doesn't think the cortozone shots will really work. He didn't talk about Minoxidyl (rogaine) or finasteride. He is going to investigate the next step up for me (possibly Actos). He does not want to prescribe that to me now because there is a "black box" warning for possible serious side effects. The disease can go on for years or just stop. No one knows. Wish I could give you all better news. Looking forward to hearing from Celia . . .

Thanks for that, Pam. At least after all we've already found out, what you say doesn't come as any kind of shock. But I'd really like to know if the Clobetasol foam serves any useful purpose if there's no itching and burning, only the hair loss. The Minoxidyl has certainly made my remaining hair grow more quickly - needed cutting 2 weeks earlier - but I can't tell if the individual hairs are stronger.