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Comment by Judy on December 4, 2012 at 10:39pm

Lace, as I am rather new to this, I would appreciate your info on the San Diego group. From what some of the ladies have been saying the support groupa are helpful. I am out of town right now but return to SD soon.

Comment by PamW San Diego, CA, USA on December 4, 2012 at 10:36pm

Started Actos tonight. Keep your fingers crossed for me! My dermatologist said to use the Clobetasol on areas that have redness. It works by stopping the itchiness and the inflammation. Be careful on areas near temples and nape of neck because it can cause thinning.

Celia, you will love your eyebrows. My gal said they have to be touched up every year.

Wonder if we can skype with each other????

Comment by Lace on December 4, 2012 at 7:27pm

There is a support group in San Diego that I am thinking of attending; I think it's so true that being around others who are experiencing the same thing is healing. I so appreciate this forum, even though I post rarely; but I also look forward to being in the company of women who have walked this journey.

Comment by KarenGinny - Iowa, US on December 4, 2012 at 4:07pm

Oh and Celia, you are right, if it was the doctor's wife or mother being affected they would much more concerned about it and looking for treatments. I've heard there is an Alopecia support group in Omaha, Ne which is near me but I haven't gone to a meeting. I should look more into it.

Comment by Heidi Short UK on December 4, 2012 at 4:03pm

Hi everyone! Celia your eyebrows will calm down in a few days, I love mine, I feel more complete with them, just make sure you keep them from drying out for the first week, as if they scab up too much it will lift the pigment too.
Liz have you thought of jumping the que to see a private dermotologist. When I was first realised I had a problem and it wasn't going away my GP did lots of blood test but nothing was found, he then suggested I saw a derm I was sobbing so much I think he was embarassed!! I was in such a state I asked if I could go privately, he wrote a letter straight away and then I rang my local Nuffeild private hospital and I got an appointment 2 weeks later. It cost £150.00 for my first consultation and £90 for a follow up about 6 weeks later. Once I realised that there was not much else he could do and so I didn't have to pay any more I asked my GP to put me under the NHS derm, thats who I am with now. I know it is a lot of money but I rather that than waiting around getting more and more depressed and ancious, it was a small price to pay for peace of mind!

Comment by KarenGinny - Iowa, US on December 4, 2012 at 4:02pm

Celia, so happy for you that Eyebrow Day went well. It would probably take some getting used to it, but easier for you in the long run. Have a great evening!

Comment by KarenGinny - Iowa, US on December 4, 2012 at 11:23am

Liz and Debs, I agree also about the doctors not being very understanding of this condition. When I was diagnosed in March 2012, my Derm had done a biopsy and then told me it was FFA. He told me there were some drugs being used but he didn't recommend them because of side effects. And that was it. He said some women lose the whole front half of their hair and it would continue till it just stops. He seemed somewhat sympathetic, but didn't offer any other treatment, counseling or support. He had seen only a few other women in my town with this condition. I held my emotions together until I left, but I was too much in shock to think of asking any other questions. I've thought of going to another dermatologist, but I'm sure it will be the same, and my insurance wasn't covering the diagnosis and it was very expensive to keep going. I'm not sure if my insurance would cover a wig, probably would for someone with hair loss from cancer treatment, but I don't know about alopecia. So I'm just hoping to hold on to the hair I have left and try to cover the rest.

Comment by Debs on December 4, 2012 at 9:34am

Liz, I agree with you completely. In fact I wrote a letter of complaint to my GP a couple of weeks ago. When he told me last December that I had alopecia he was very brusque and it put me in a complete tail-spin that I am only now coming out of. He ruled out any drugs and just left me to get on with it. I have received a letter from the surgery saying in future he will give out some self help info for people with hair loss: I told him the website address of this site and a few others. This is a common theme that GPs don't show any understanding for alopecia. I have told my surgery I refuse to be treated by this GP any more. I have an appointment on Monday morning to ask for a referal to Dr Harries and to ask about my 2 NHS wigs I can get free. I am sure they will be terrible quality but I can use them for on the beach or whatever... XXX

Comment by Liz on December 4, 2012 at 5:38am

You know what I'd like, apart from offers of medication I'd like the doctors to offer advice and nuturing. I'd like them to be interested, to spend time with us when we see them, and to feel that they take us seriously and really care. If, which it appears is the case, they dont know much about the condition, there are better ways of being told. It's possible to give bad news but in a nicer more helpful way...Anyway, thank you all for making this crazy condition more bearable. I'm prepared to go balder in your lovely company :o)

Comment by Debs on December 4, 2012 at 5:18am

The drug HYDROXYCHLOROQUINE SULPHATE 200mg twice a day is being used to treat other types of scarring alopeica - I have just got this info off another alopeica support website. This anti-malarial drug has been mentioned now by several ladies in this group and I am seeing it talked about on 2 other alopecia users websites. Dr Harries has talked to Celia about this drug also.

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