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Comment by Jules UK on December 3, 2012 at 8:21am

Celia -did Dr Harries comment on the 3M drops or minoxidil? I'm just waiting for a call back from my GP about whether I can continue to dye my hair whilst using Protopic, and about its connection with skin tumours. Debs - do you wear a full wig or a hairpiece? I suppose I'm "fortunate" that my hair has gone from the sides first and is only now thinning at the front so haven't needed a wig yet. My husband has suggested that I simply let FFA take its course naturally, buy a wig and get on with life. He did say it was easy for him to think that way, but it had also crossed my mind. X

Comment by Debs on December 3, 2012 at 6:04am

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.

Comment by MairiM on December 2, 2012 at 5:46pm

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.

Comment by PamW San Diego, CA, USA on December 2, 2012 at 11:08am

Celia, two things. One Plaquenil does help some people. If it didn't doctors would not prescribe it. It takes 3 to 4 months for it to get into your bloodstream so the sooner you get on it, the better you will be. Two, I have scar on my eyebrow from a fall I took as a kid. The makeup artist went right over it a few times so that it would match the other brow. You will feel so much better with eyebrows.

Did Dr. Harries mention Actos? Why does he prefer Protopic? I wonder if we can get that in the US?

I wish I knew a wig expert. I think if we knew that we can still look good wearing hair, we would all calm down. Hugs to you, Celia. You are an inspiration.

Comment by Liz on December 2, 2012 at 10:02am

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

Comment by Debs on December 2, 2012 at 6:32am

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

Comment by Jules UK on December 2, 2012 at 4:25am

Good morning! I wondered whether anyone has tried protopic cream. Since Dermovate isn't helping any more, I've been given this to try. I'm. Bit worried that there's a warning with it about skin cancer, which I've had twice, and that you can't drink alcohol! No wine over Christmas....., I just can't remember if anyone's mentioned it before. I agree that it's puzzling that there's no news from celia, but I'm sure she'll be in touch when she's ready to talk. Hope she's ok. X

Comment by Anabela on December 1, 2012 at 5:41pm

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!!!

Comment by MairiM on December 1, 2012 at 4:42pm

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.

Comment by Debs on December 1, 2012 at 2:45pm

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

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