Comment

Comment by ElleMN, USA on January 28, 2013 at 10:52am

My next appointment with my dermatologist is Feb 12 and I'm contemplating stopping the steroid shots. I've looked online about potential side effects but was wondering what any of you have experienced, and what your thoughts are. It doesn't seem to be making a difference -- the hairline keeps moving back. Maybe it's slowing things down but I'm beginning to feel like it's just postponing the inevitable. I'd love to hear what you think!

Comment by Debs on January 27, 2013 at 4:16am

Hi Celia, I have 3 different brands of shampoo/conditioner for synthetic wigs. I am in no way an expert on this... I use the Jon Renau shampoo last time and their conditoner to stop static, I am happy with the result, I also have some Gisela Mayer that I have yet to try. I have purchased it from any online wig supplier - they all sell styling products. However, I have been advised by a wig salon that they use baby shampoo and fabric softener for all their wigs and it works just as well. The wig in my photo is Julia by Jon Renau, I bought it for a bit of fun from the wigtrendz website. Glad you had a fab holiday Robyn. I have only been skiing once and I am too much of a wimp to try it again.

Comment by Heidi Short UK on January 26, 2013 at 2:53pm

Hi everyone I haven't been on for a while I've just come back from a skiing holiday in Les Arc in France. It was lovely not thinking about my hair all the time, only when I took my hat off!. I had more important issues to worry about, like how am I going to get down this slope without taking out all the other skiers on the mountain! it's only the second time I've been but I really enjoy it but I wish I was better at it!
Well there has been lots of conversation, Celia I'm so sorry about your sister in law I'm sure she will be fine she sounds a strong lady.Congratulations to Robyn on your new granddaughter you must be so proud! Debs, I love your new photo I can't believe that you are wearing a wig, you give us all confidence that if the time comes when we have to wear one we can look that natural too!
I was told that dying my hair will not make any difference now as the damage is done below the skin, but I have dyed my hair since I was 18 as I had my fist grey hairs when I was 16!
I have had hayfever since I was 23 and over the past few years I have suffer throughout the year with inflamed nasal passages and in the last couple of years I suffer from really itchy salivary glands which swell and I look like a hamster after I eat certain foods! So yes I am definately one who suffers from allergies!

Comment by PamW San Diego, CA, USA on January 26, 2013 at 12:24pm

Hey, Debs. I love your new photo. You look great in that wig! So glamorous. I wonder how big a problem this is going to be before someone figures it out. People have had alopecia aerate for years and years, and doctors can't cure that either.

Comment by Debs on January 26, 2013 at 12:04pm

Pam I poised this question about hair dye on a UK based alopecia website and I had ladies tell me they had never used chemicals on their hair and had FFA. Like you I have dyed my hair regularly over the years. My derm has asked me not to as he believes that the chemicals women use on their hair in modern times may well be a trigger for FFA. I have not dyed my hair since I first saw him last July - it has not made any difference. Since I am wearing wigs now I am not going to dye it in the future and am using sulphate free shampoos to try to be gentle on my scalp.

Comment by PamW San Diego, CA, USA on January 26, 2013 at 10:56am

I trust my hairdresser. She knows my hair. I was told that dying your hair won't hurt you. the damage is being done deep down the hair follicle. I think dying plumps up the hair shift making your hair look thicker. My hair dresser does highlights and lowlights to create shadows which she says adds the look of volume.

Comment by PJ - MN, USA on January 26, 2013 at 9:38am

Sorry about your news Celia. Sounds like she's a very strong woman and a survivor, having gone through this before. Keep positive thoughts!!

I was wondering if there is anyone in this group that has never dyed their hair. I have for the past 20 years. I went to get my haircut yesterday and right away my hairdresser mentioned something was going on, she pointed out more hairloss on the side of my face on my hairline. So much for my Dr saying I looked better. Who do you go by - your Dr that is a hairloss specialist or the woman cutting your hair for the past 22 years every few weeks? My hairdresser is the one who encouraged me to keep looking for the correct diagnosis when I was first told I had Alpecia Aerta. She didn't believe it. She also feels I should stop dying my hair, but I am really gray for my age. Has anyone stopped dyeing their hair and noticed any improvements?

Comment by Debs on January 25, 2013 at 11:08am

Celia, I am sorry to hear the bad news about your sister-in-law. The fact that she has a diagnosis and can begin treatment immediately is one positive I guess. I wish your family the very best in the coming months.

Comment by Robyn, Melb. Australia on January 24, 2013 at 9:07pm

Hi ladies,
Thank you for the best wishes on our new granddaughter! I have been reading the discussion with interest and there are certainly a lot of theories about aspects of the condition which I think helps us to maybe recognise aspects of our own particular circumstances. Liz since I was young I have suffered from heyfever and in my 20's asthma(mild). In the last 10 years my asthma has been non-existent and in the last 2 years my heyfever has reduced so much I really don't think I get that anymore - it makes me wonder whether the Planquenil I have been taking for almost 2 years has anything to do with the heyfever disappearing - it could be a co-incidence of course (a positive side-effect from medication for a change would be good though!) I'm not sure about the shampoo theory as I have used all sorts over the years. I agree with others about the economic circumstances dictating whether women follow through with medical treatment - many of us I'm sure hesitated to get advice as we saw it as such a 'small thing' to worry about given other more serious diseases. I certainly felt that way when I saw my specialist, particularly after my GP (female) thought it might have been my hair straightener pulling my hair out....although she did give me a referral to the specialist "just in case I was concerned"! Needless to say I don't see that doctor anymore! I also agree that FFA has probably been around forever, but in generations before us women have accepted this as an older age condition. When I was much younger I do recall seeing ladies with what looked like a receeding hair-line which I suspect was FFA. It sounds to me like we are very resourceful women, particularly when it comes to grooming so it's great to hear what others are doing to minimise the appearance of our 'receeding tresses!' Thank you for all this great information. Robyn

Comment by Liz on January 24, 2013 at 6:20pm

Hi everyone. I took a deep breath and got my haircut today. It's the first time I've had it cut since my hairloss started to show more. A lovely student was cutting my hair who has one more haircut to do before her training is finished. She was very lovely about my hairloss and showed me ways to brush it to hide it better. One thing I found interesting was that she had never heard or been told during her training that there is such a thing as scarring hairloss. She was led to believe that in all forms of alopecia the can grow back. It's a shame that hairdressers who are training now seem unaware of this condition.
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