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Comment by Jules UK on December 21, 2012 at 12:14pm

Thanks, Debs. It was as I anticipated really, but at least if any research is undertaken, hopefully we'll be in the right place to benefit with Dr Harries, perhaps. He didn't tell me anything I wasn't already aware of, but prescribed a stronger Protopic plus antibiotics. My impression from what he said is that, with this condition, we are each "pre-programmed" to lose an amount of hair. He cannot predict for anyone how much they will lose, nor how quickly. He cannot even say with any certainty that treatment makes a difference. For some, it seems to, but they may have slowed hairloss anyway.
It sounds quite negative but in a funny way, I feel a bit more accepting of it now. I'm crossing fingers that I'll be one of the lucky ones who only lose an inch or so from the front. The rest is OK really.
Celia, I'm sorry but I didn't pick up your email until after my appt. I went up on Wed night and didn't have Internet connection. But when I lost my hair from the temples this year, I didn't notice any redness either. I think recession from there has now stopped but I'm still putting Protopic there.
Happy Christmas everyone! Let's forget FFA for a few days if we can! Xx

Comment by Debs on December 20, 2012 at 11:15pm

Jules - good luck with Dr Harries today. I will be thinking of you.
Barbara - welcome to the group. XXX

Comment by Jules UK on December 19, 2012 at 11:48am

Welcome Barbara. Hope you find the posts here useful - I've learned more here than from any dr so far. But I'm seeing Dr Harries tomorrow so, although I pretty much know what to expect, it's reassuring to know that I'm "in the system".

Comment by Barbara on December 19, 2012 at 11:29am

Hi All, I have just joined as a member so not sure where to put a comment yet, forgive me if I get it wrong! I was diagnosed about 3 yrs ago with FFA, but have probably had it 5 yrs,lost all eyebrows, bottom eyelashes and 2 inches from front hairline, currently hiding it with longer hair and fringe. My scalp is always tender but slightly better now I use shampoos without sulphates etc. I have a kind of rash over much of face like goosebumps under the skin and dermatologist said she had only seen one other person with that and ears and eyes get itchy too. Had initial treatment with demrmovate etc but nothing works. Thinking of eyebrow tattoos. No further help from dermatologist after diagnosis. Just hope it burns itself out eventually. I am 65 and in good health apart from high cholesterol due to start statins, bit reluctant as they can cause hair loss too. I don't think there was any major trigger that coincides with the onsetof FFA. I am catching up with reading all the messages, well done Celia for setting it up.

Comment by Heidi Short UK on December 10, 2012 at 3:48pm

I don't know how to, but I wouldn't mind skyping!

Comment by Heidi Short UK on December 10, 2012 at 3:34pm

Celia- Its a shame I don't live nearer, I would love to meet up! Can you tell me what is Protopic and why you have to wash your hair every day?

Comment by Jules UK on December 10, 2012 at 1:29pm

Celia, how are getting on with Protopic? Do you think it is helping?

Comment by Debs on December 10, 2012 at 8:55am

I asked my GP today to refer me to Dr Harries at Salford, she said yes, so I am waiting for my date. I am going to fly to Manchester from Heathrow and then it is only 15 miles from the airport to the hospital so I can get a taxi. I hope the date comes through soon. I also asked about NHS providing wigs, she has not done this before and is writing to the surgical appliance dept of my local hospital to sort it out - I have already bought a few myself but I will take the NHS wigs and can use them for swimming and stuff like that if they are not very nice. This GP was very obliging, I was worried that I might have to really fight my corner to get referred but she agreed very easily, so anyone else in the UK that is thinking of asking for a referal to Dr Harris, I would say definately go for it.

Comment by Debs on December 6, 2012 at 2:20pm

I have been very lucky this week, I got to meet Celia for a coffee on Tuesday and on Monday evening when I attend an alopecia support group I met another lady with FFA. It was great to be able to talk to ladies that have the exact same condition as me and who understand what I am experiencing and Celia your brows look very natural they did a great job. xx

Comment by Jules UK on December 6, 2012 at 6:55am

Judy, I also have a couple of small red spots between the eyebrows. How weird! I hadn't made a connection with FFA, but it would be interesting to know if others have it too. I just put it down to ageing.
Celia, I wondered how you're getting on with Protopic. I find it makes my fringe very greasy. I tried dry shampoo, but without success. It isn't having any effect yet but I've only been using it since Sunday.

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