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.

My impression was that the Clobetasol was to help with itching and burning. The itching is caused by the inflammation. So, if you are not red, sore and itching, then perhaps the inflammation is minimal(?) Just a guess. Mari, when you initially used the Minoxidyl did it cause you to shed? Also, can you tell me if you put it all over your head or in just the bald areas?

Thanks for sharing Pam and Mari. I guess we three are doing the same treatment. Hydroxycloride is the generic for Plaquenil, right?
Actually, I am using Clobetasol lotion , a clear liquid. She said to use it every day or every other day. It cleared up the inflamation and itching right away. I also have been wondering if I should be using when scalp is clear. Still, the hair loss continues. I can't imagine another med with more side effects that Hydroxycloride. I was terrible sick for the 1st 2 weeks but now am fine and am glad i didn't quit. Thanks to this group.
I don't see my dermatologist until January. She said it would take about 2 months to see if the meds are working. She has one other patient they are following with FAA. Wish there was just one doctor who specializes in this in San Diego. I would think UCSD would be the best bet. I think that the reason they know so little could be that there is not a great amount of women with this and they just don't fund research for something that is non life threatening and with so few.

I am on straiaght Medicare so I think it would be covered for me, plus my best friend lives very close to UCLA - her husband works there.. How did you hear about this doctor and do you remember his name??

Hello Pam, thanks very much for posting this info for us all to share. It will be interesting to compare the advice Celia is given by Dr Harries. I hope you are able to relax a bit now and enjoy your weekend. xx

Pam, I was thinking the same as you... Celia may just be having some time to relax after her consultation on Thursday, I certainly hope that she did not have any upsetting prognosis. xx

Pam - I haven't had any hair loss with the Minoxidyl. I've been making partings all over the top of my head and applying it. My thinking was that I need this hair to be in good condition to cover up the gapsin front! This may be totally wrong, but there's no clear guidance from the medics. The minoxidyl was prescribed by my consultant - we are lucky that we get prescriptions free in Scotland.

Good evening to all.
One of the best Portuguese dermatologist that I consulted in Oporto, told me that the implant is not possible, since the skin is healed, therefore, has no pores to breathe. He gave me an example, "it's like trying to plant trees on cement." We can only hope that the hair stop falling.
So, let's enjoy the weekend and relax our mind and be happy!!!

Celia, thanks so much for passing on this info. At least we all know what the options are for us and we are as best informed as the dermatologists themselves. I am very pleased for you that Dr Harries gave you some treatment on the day. Both you and Pam have now mentioned the anti-malarial meds as a treatment. I will look into that too. Thanks again, enjoy your weekend. XX

Hi Sandy. I have a good knitting pattern for ones that are wide at the front and thin at the back. If you google etsy you can buy either the patterns or finished items. I have also made some material ones which work well :o)
Hi Celia. Thanks for the feedback on your appointment with Dr Harries. It seems like he is doing all he can and he certainly sounds more thorough than my doctor. I guess that as more and more people are diagnosed with it it will become more known and researched. I would like to get it talked about on tv and in magazines but Im not sure how. I contacted embaressing bodies but the answerphone told me that they dont need anyone else until next year. Do you or anyone else have any ideas?
xx

The consultant I saw is called Dr Colin Fleming at Fernbrae Hospital, Dundee. He didn't say that he had a particular interest, but he did say that he had seen a number of cases of FFA.

I have emailled Dr Harries on the email that Celia gave us all before, to ask how I get a consultation, it is a pain that we have to go to Sheffield, I have asked in the email if he can treat me remotely via my own GP.. to save me the journey, but if he can't I will just fly up there. A lady with FFA on the Alopecia UK website has posted a cream PIMECROLINUS is being presribed for FFA - it is an anti-inflammatory normally used for other skin complaints. Re the wide headbands, I have just had 5 arrive from a website in the USA, lovely big wide ones in pretty colours www.coveryourhair.com I will be able to wear them to the gym and the beach on holiday, or if you just need to run out of the house quickly to nip to the shops. They are fine for casual use. Tonight I go to my first support group meeting with the Alopecia UK group. I know we are a minority group in alopecians but I do need to engage with people that understand hair loss.

Debs - you have to ask your own GP and he will refer you. Dr Harries said in my letter he would accept a referral from my GP and I think they have to do this under NHS requirements for choice. Good luck!

Hope you find the support group tonight usefull Debs. I've now come off all my meds. The steroids were giving me nosebleeds. I'm not sure if and what I'll try next. The first thing I shall do on Wednesday is go and see my doctor and moan to him or her about not seeing the dermatoligist until next June.

I shall talk to my doctor about Dr Harries Celia. I haven't had any cream prescribed.

How do I know if I have inflammation Celia? I have no itching or redness. If I pull on any hairs they come out so I guess the FFA is active but other than the hair loss I have nothing else.

I am the same as you, liz - no inflammation or redness. My hair loss has almost stopped, though, I hope not temporarily. Dr Fleming said he couldn't see inflammation with his little gadget. Wish I had thought to ask if it is too deep seated, in our cases, to be seen. Also didn't ask if the clobetasol could actually reach any inflammation, if it isn't near the surface of the skin. If you ask your GP you should get to see Dr Harries in 6-8 weeks and then you can ask him. It's just not right that you have to wait until June.

The inflammation begins deep at the root of the hair near the sebaceous gland. See if you can google a sketch of a hair follicle. The damage occurs at the root of the follicle, near the gland. The gland secretes a toxic lipid, which causes our auto immune system to attack the follicle. The follicle scars over and the hair falls out and is never replaced by a new one. I am going to my regular derm tomorrow and I will ask her about the redness (if I remember). Menopause has made my brain mush.