Comment

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.

Comment by Debs on December 4, 2012 at 4:36am

Jules - no, I don't wear a wig at the moment... I am starting to wear them out socially and will go into them at work in the New Year because my hair looks messy. I will get to my GP and sort out an appointment with Dr Harries. Liz, it really is ridiculous how long we have to wait for appointments with this condition. I waited from March to July to get my 1st consulation with a derm. I had a really lovely experience last night with the ladies at the Alopecia UK support group. One lady has FFA... I could not believe it. It definately is not as rare as these doctors are trying to make out. She was wearing a custom made hair system, it was completely undetectable and totally blends in with her own hair. It just covered the front part of her hairline and she gets that done in Bond Street, London. www.greatlookinghairlondon.com Simon - 07949 207848 if anyone in the UK wants to give it a go. I can thoroughly recommend going to a support group. It was a relief to meet people that have experienced hair loss. Everyone was very friendly. I will definately go back.

Comment by PamW San Diego, CA, USA on December 3, 2012 at 11:25pm

Judy, I was told to dab the Clobetasol. You dont want to use too much because it can thin our scalp. I think the clobetasol is for itching, burning which occurs at the surface. The attack that is going on deep down cannot be treated with a topical (that is my opinion). I believe that this is why our disease is so difficult. Doctors treat the symptoms but cant get at the "root cause" (sorry formthe bad pun). Eve though the redness and itch are gone, hair continues to fall because of the attack deep within. The only drug thatvtheybfeel actually stops the hair from falling has been Actos. My docsnare reluctant to let me try that but some people have tried with success. One of the earlier members, Carol Sue, was on Actos. Mari, what do you think slowed down your hair loss?

Comment by Judy on December 3, 2012 at 9:03pm

Hi Pam, Thanks for the doctor's names in LA and SF. I will definitely consider going there after I evaluate my next appointment in SD, January.
Your information about the hair root is interesting - you have done your research - good girl! it made me consider that I am not applying the Clobasel correctly. I am just dabbing it on so now I will try using more.
Good luck at your appointment tomorrow.

Comment by Judy on December 3, 2012 at 8:54pm

Celia, thanks for your information. Perhaps you were disappointed that you didn't learn more but realistically, we know there is not much informationv available - you went to the best and that is great. It sounds like you received some excellent care and meds plus you will be seeing him often. Very encouraging.
I was thinking that it sometime might be interesting for us to do our own mini research ie: each of us taking one or two ideas of what we think might have caused the auto-immune and then comparing to see if there is any kind of consensus among us on any one thing. Maybe, after the holidays I will suggest it??

Comment by PamW San Diego, CA, USA on December 3, 2012 at 6:37pm

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.

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