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Comment by Liz on May 7, 2013 at 1:56pm

Hi. I've had a good 'hair day' today :o) A friend recommended a local hairdresser who specialises in hair conditions such as alopecia and scalp problems. I went to her for a haircut and she is really lovely. She sees each client on thier own when she cuts there hair so that they feel comfortable chatting to her. She has had alopecia herself so has an understanding of the psychological impact that this condition has. She uses natural products. She didnt try to sell me anything but gave advise when I asked her.She knows of people who have had tattooing on scaring alopecia on the temples. She said because of the difficulty in knowing how much hair we will lose that might not be something we can consider but it was good to know about it. I asked about vitamins and she said that 2 ladies she knows take Viviscal multivitamins. She said that about 4 months later she could see a change to the hair coming through (The ladies had a different form of alopecia so the change was to the hair they had left and doesnt make new hair grow). She also recommended Floradix which another friend had also recommended a few weeks back so I already have some. Anyway she is going to try and find out more about FFA. She recommended a haircut which I had and I feel better :o) I may even go without the hairband all the time xx

Comment by Alice on May 5, 2013 at 6:57pm

PJ, I think I started out using Elidel on my brows twice a day but found that it was hard to get my brow makeup to look good. I've been using just at night for quite some time. It does go a very long way. My derm has been giving me samples and one of the small tubes lasts over a month, so I've never had to buy any. Since we are using it on such a small area, it's hard to imagine there would be much risk. I think people using it for eczema must use it over much larger areas.

Comment by PJ - MN, USA on May 5, 2013 at 12:42pm

Alice - Thanks. I knew someone on this site had used it but couldn't remember who. I looked back at some posts and saw that you started out using twice a day. My Dr has me using it every evening. How long have you been on it? There is a warning on it that says there may be a link to cancer with long term use. The tube I have should last a couple life times you use so little.

Comment by Alice on May 5, 2013 at 12:04pm

I have good luck with Elidel cream on my brows, to the extent that they are almost fully grown back. I haven't had muc luck using it alongbthe hairline yet but am still hopeful something may sprout.

Comment by PJ - MN, USA on May 5, 2013 at 11:47am

It does help to talk to other people with health issues worse than FFA - keeps it all in perspective. It also helps to have a supportive spouse or significant other. My husband doesn't like all the meds and steroids that I'm taking for this. His thought is, as long as you have your health you have everything, which is true. But we still need to figure out what is causing this!

On another note - has anyone used the both clobetasol foam and shampoo? Any preference? I was using the foam, but getting frustrated with it. It seemed hard to get to my scalp, just melted on my fingers or stuck to the hair. The foam I just dabbed on the pink areas at night as needed. Now I'm trying the shampoo. Tried the shampoo for first time this morning. This is more time consuming. I parted my hair and went down the entire line, where some was pink and some not on the top of my scalp where I have had more itchiness. Is that how to use it? When you read the information sheet that comes with the shampoo, it sounds scarier than the foam! Do you apply either one in the dented areas from injections? Also I started using Elidel cream on my no hair eyebrow area, and I think she wanted me to apply it along my hairline. Anyone had luck with that cream? Both these meds sound like they are for short term use - but how short term? These meds can be expensive if your insurance company doesn't cover them. Wondering is there a place you can donate any of these meds when you find out they don't work for you after only a couple uses. It would be nice to help someone else out.

Comment by Heidi Short UK on May 4, 2013 at 4:39am

Hi everyone- Liz i love your idea of a naked run, can you imagine all of us maturing ladies running through London, at least we wouldn't be worrying about what our hair looked like!!! From your photo you posted, your hair lose is slightly different to mine, I think mine goes back further on the temples but is perhaps less at the front with the 'dolls hair look'. Mine is also completly smooth on the temples with no whispy hairs. You were also saying about frizzy dry hair, mine has also gone very dry, but I use hair straighteners which when used properly (GHD's are the best) really help. I also wear my hair in a similar style to yours, so when we meet up at Celia's shall I bring them to let you have a go. You also mentioned itchy sore ears, I have been been to the doctors this week with a reacurring itchy salivary glands, sore mouth and tongue ,sore spots in my nose and the last straw was when I woke up on Thursday and my left eye had puffed up, it wasn't sore or itchy it was just my eye lid had swollen up! He took more bloods and said there was a type of autoammune disease which can effect the salivary glands, great, something else to look forward too!!!!
Celia glad you had a good visit with Dr Harries, I've been on hyrodroxychloroquine for over a year now with no side effects and it has slowed my hair loss, but it hasn't stopped it completly. I'm really looking forward to seeing you all in a few weeks, it was lovely to hear about Pam and Judy meeting up, its surprising how having someone to talk to can work even more than any medication.
Debs- I did giggle when I read your post to Chrisy, my first thoughts were that's a bit harsh, then I realised what you had done! Thanks for sharing the story of the young girl, I think thats why FFA, at the moment, isn't taking over my life because it could be so much worse, I'm glad its me and not my daughter who is suffering, because I think I would find that harder to deal with. It pulls on your heart strings thinking of all the young people suffering with any type of alopicia, it does put our problems into perspective.
Well I'm off to put my wellies on and tackle my garden,hope you all have a lovely Bank Holiday! X

Comment by Celia on May 4, 2013 at 2:58am

Debs - thank you for that ! You are sooooooooooooooooo right ! You are inspirational and we all need that approach. X

Comment by Debs on May 4, 2013 at 2:37am

Just had an epiphany moment.... I started work very early today... I was sitting down just relaxing when a colleague come up to me, she whispered in my ear do you have alopecia? she went on to say that her 14 year old daughter has alopecia and she fits her lace wigs so she could tell I was wearing one... I said yes I do have alopecia and asked her how her daughter is coping... Well, this young lady is getting on with life and with the support of a very good mum is using wigs to help her appearance. I took her email address and when I get home will send her info on wigs and eyebrow tattoos ... I knew that young people suffer with hair loss but until this morning I had not met anyone that was coping with hair loss at such a tender age... This has really pulled me up and I feel blessed I have only had hair loss at 50 years old and dis not have to live with this when I was growing up. I really feel very different about my FFA since having this conversation.

Have a great day ladies. Xxxxxx

Comment by Debs on May 4, 2013 at 12:47am

Whoops... I meant to address that last post to Chrisy and predictive text made it come out as Christ.... Sorry.

Comment by Debs on May 4, 2013 at 12:46am

Christ, biotin is vitamin H. It does aid hair growth... But it is not a cure for people with alopecia. I am sure it will be good for overall health but it is not tackling the inflammation in our scalps that leads to our hair loss. I am using the turmeric extra supplement in the UK because turmeric is proven to control inflammation in auto immune conditions.

Chrisy I think it is a shame the conventional medical doctors don't take a more holistic approach to treating us, it would be ideal if they could recommend the right vitamins, minerals, herbs etc.. To use that would work for our auto immune condition. Then we could use a more natural treatment plan. I am sure if you take biotin it will benefit you in some way even if that is not hair growth.

If you have a local herbalist maybe you could get expert advice.

Good luck.

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