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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.

Comment by Judy on December 6, 2012 at 12:24am

Lacy and Pam - looking forward to our get-together. I will be back in January...
Pam, I am so sorry you are having such problems. I am sure you know this but isn't loosing hair one of the possible side effects of Plaquenil? Perhaps you are one of those side-effect statistics? I sincerely hope the Actos changes things.
I guess I am not at that point yet. My hair is thinner and the loss at forehead and temples is significant but, the mystery to me is... Where had that hair disappeared to??? Or maybe my eyes are worse than I thought.
Celia, I will do my profile next week-- so glad you started it.
I have a few other questions:
1.Wondering if anyone lost most of their body hair also... like arms, legs and for older women, my age, that ugly, ugly chin hair? (That is the one blessing here.)
2. Some of us suffered excessive stress prior to getting the autoimmun dusirder & FAA. I realize this is far-fetched but just wondering if there are others.
3. How many have that red, rash-like spot between the eyebrows?

Comment by ChrisC. Chicago, IL on December 5, 2012 at 11:14pm

Hmmmm, I have an appointment with Dr. Barbosa at the end of the month. I'm going to talk to her about it. Since going off the Clobetasol, my skin has really improved but I feel more prickling sensation in the front of my hairline and it does seem to be thinning and receding more. I have not felt a thing until the last 3 months. Now my eyebrows are nearly gone and I do have more receding at the front of my hairline.I'm in the midst of alot of stress at work so that may be contributing. Anyway, based on what I've read only the ACTOS is actually treating the condition as opposed to the symptoms.However, it is not a cure. But hopefully, it will stop it in in's tracks!! Keep up posted on how it is going.

Comment by PamW San Diego, CA, USA on December 5, 2012 at 7:26pm

Celia, I have to get my kids here to teach me how to Skype. As soon as I know how, I will call you. chris, I have been on Plaquenil sine August 1. I do have days when I dont even think about my head, but I still have MISERABLE itchy, burning days when it even hurts to brush. my temples have receded a bit more and I am most troubled by the loss of volume. Everytime I touch my hair, I see hair coming off. The other day I opened the dish washer, and there was a long blonde hair! Hair in my car, on my clothes, hair, hair everywhere. My center part is getting wider. it is only noticeable to me because I know my hair. I also see pink on my scalp. I just cant wait for it to get worse. The doctor is letting me stay on the plaquenil and take 15 mg of Actos a day. Dr. Price says 30 mg in her literature, but she wants to be conservative. I never heard from Carol Sue, but I have communicated with a woman from the LPP facebook page who has been taking Actos for 3 months. She has a very severe case of LPP and she said Actos is the only thing that worked for her, and she is sorry that she didn't go on the drug sooner. I just feel like I have to try. I am not the type to go down without a fight.

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