Comment

Comment by Jules UK on March 30, 2013 at 3:48pm

Thanks PJ for your advice about steroid shots. I'm pleased they're working for you. I'm still confused about what course to follow. Celia, I wondered why you decided to come off all meds?
I've coloured my hair for about 25 years but recently switched to an ammonia free, low peroxide colour. dr Harriesvsaid it was OK to colour providing the dye didn't touch the scalp! Not quite sure how to manage that.... I wash my hair daily and have done as long as I can remember. I now use Daniel Galvin organic range (from Waitrose). But I don't have any of the itchiness that many of you suffer from. Both dermis I've seen have said frequency of washing had no bearing on the condition.
Happy Easter! X

Comment by Simone NJ USA on March 30, 2013 at 3:15pm

Thanks Alice !

Comment by Alice on March 30, 2013 at 2:21pm

Here is the link to an article about FFA that mentions the toxic lipid theory. I found it on the CARF website, under the Research tab.
http://www.carfintl.org/assets/docs/articles/Drugs%20in%20Dermatolo...
Just what I needed to hear - that I have a headful of poison fat! It doesn't indicate whether it can be improved by frequent washing.

Comment by Caro UK on March 30, 2013 at 1:52pm

I've been wondering how often to wash my hair as well. Any advice would be very welcome. Like Alice, my hair is quite dry, very fine and fly-away. I've been colouring it for years. I have been used to washing it twice a week with a shampoo for coloured hair and then a conditioner. At my last appointment my derm gave me no advice on how often to wash it or what products to use, but to be fair, I never asked him! I've been reading other people's posts and what their derms suggest and anti-fungal shampoos such as 'Head & Shoulders' which contains zinc pyrithione or 'Nizoral', which contains Ketoconazole are recommended. I have never had an itchy, flaky scalp or dandruff so I've never used either of these, but I've had some red spots on my scalp recently, and now I know what to look for, I can see that the follicles are showing signs of inflammation near the hairline. I've been using Dermovate which my derm prescribed, which clear up the spots very quickly but new ones reappear after two or three days. I bought some 'Head & Shoulders' today. Out of the blue about three years ago, having never had any skin problems before, I developed Rosacea on my cheeks and nose. My GP prescibed an anti-fungal gel called Metronidazole. I believe Rosacea and LPP are linked, if I am right in saying?

Comment by Simone NJ USA on March 30, 2013 at 11:18am

Hi Alice:

What exactly are toxic lipids and how do they affect FFA? Thanks..

Comment by Alice on March 30, 2013 at 10:25am

Jules, How often do you shampoo your hair? I'm confused about whether it's better to do as little as possible to one's hair or wash it every day. My hair is quite dry, so doesn't need frequent shampooing, but I've also read that one of the theories of FFA is that toxic lipids build up in the hair follicles.

Comment by PJ - MN, USA on March 29, 2013 at 11:11pm

Jules - I just want to comment on the steroid injections. I seem to be one of the few that have reported some regrowth on my front hairline and temples, none on the eyebrows yet. At the time of the regrowth, the treatment plan was the steroid injections, rotating between DHS Zinc Shampoo and Head & Shoulders Classic Clean shampoo, using Free & Clear Conditioner and Free & Clear Hairspray. I didn't get the indentations until I think my 3rd round of injections. In my case I think it depends on who does them as to whether I get dents or not. My Derm is at a teaching hospital so you have residents that do them sometimes. I have one in the middle of my forehead along the hairline that isn't going away, otherwise the rest are slowly disappearing. Luckily my hair covers it yet.
The key though is to catch things before the hair follicles are blocked/scarred and only the Dr's might know when that is.

Comment by Debs on March 29, 2013 at 2:08am

Celia, I went to the Belgravia Clinic in London to get a second opinion and one of their trichologists knew I had FFA literally as soon as I walked in the door.

I am very pleased Dr Harries is speaking at Edinburgh, when I saw him in February I had some photos taken - just of my scalp nothing that could identify me for his research... maybe I will be famous now he might use a photo of my poor head during his lecture!!!

Happy Easter to you all.

Comment by Kath UK on March 28, 2013 at 5:48pm

Hi everyone. I've just seen on the internet that as well as the Dermatology Conference there will also be the 7th World Congress for Hair Research held in May this year in Edinburgh. It looks like Dr. Harries will be speaking at both events. Wouldn't it be great if some new treatment for FFA came out as a result of these meetings?

Comment by Simone NJ USA on March 27, 2013 at 8:43pm

Hi CJ:
Welcome back..I agree with you...I would want someone to approach me if they thought I had FFA! I have noticed quite a few women with what I think is FFA...and for the future...I will definitely step out of my 'box' and approach them...it could save them from more hairloss....with more awareness, maybe doctors will work harder to find a cure for this disease..thanks CJ xx

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