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Comment by Celia on May 27, 2013 at 2:59pm

Welcome back Debs - hope that you were able to 'switch off' a bit on your hol. x

Comment by Celia on May 27, 2013 at 2:57pm

Rebecca - I have tried Elidel cream. Not sure what effect it was to have - but the hair loss continued.
I was almost lured into transplant by a trichologist when I lived in Dubai - but he was only trying to make money. I knew that transplanting hair from a donor site usually on the back of scalp - would not work, regardless of whether the disease has 'burnt out'. Studies report that the hair eventually falls out again as the scarred area cannot support it.
I am currently taking hydroxychloroquine and was previously prescribed doxycycline. I think that both of these meds list hairloss as a possible side effect. The ruined skin from the injections on your forehead, Rebecca, will I think slowly even out. Hang in there. We are finding out more info all the time. x

Comment by PamW San Diego, CA, USA on May 27, 2013 at 2:54pm

Interesting idea about transplanting synthetic hair - it might not need a hair follicle to sustain growth. But how would it grow? Let us know if you try the alternate to Plaquenil. Good luck!

Comment by Liz on May 27, 2013 at 8:20am

Hi Debs. Hope you had a lovely holiday, the Caribbean sounds lovely :o)
xx

Comment by Debs on May 27, 2013 at 8:16am

I flew back from the Caribbean this morning. I took a wig with me just in case I felt I wanted to wear one. I wore my buff on the plane and it was super comfy to sleep in and I wore them by the pool and to swim in. They don't make you hot and 'wick' persperation away because of the fibre they are made from. In the evening I did just put a long thin silk scarf round my head - hairband style.

Jules, I am now becoming aware my eyelashes are different. We discussed this at Celia's 2 weeks ago and since then I have become more aware of the change. I am thinking of having semi-permenant makeup on my eyelashes - this is basically just eyeliner tattoo - you can get this done very subtly so it is not thick and Cleopatra style but just creates an illusion of hair being there. The fantastic lady that does my eyebrows also does eyeliner so I will most likely have a go in a few months time.

Sleeping in wigs: if you use wig tape of glue they will stay on whilst you roll around in bed however you will damage the wig fibre so they will wear out quickly but it is possible to wear a wig in bed.

Swimming in wigs: you could swim in a wig, some people keep an old wig that they are finished wearing to wear on holiday to go swimming or wear to the gym. If you wore a wig to swim in if you stuck in on (again glue/tape) it would stay on according to ladies I have seen writing about this on other sites but the wig could be damaged by chlorine/salt water.

Comment by Jules UK on May 25, 2013 at 4:39pm

Thanks Kath. It's sleeping in a wig I'm curious about most. I'm noT ready for a wig yet and am still hoping against hope that it might not come to that. But who knows?

Comment by Kath UK on May 25, 2013 at 3:30pm

Hi Jules. About my hairpiece. I don't think I could swim in it but I haven't asked about that at the wig studio. And I wouldn't sleep in it because of the clips (and I think it would damage the hair which is synthetic, not human hair). If you look in Alopecia World under 'Wigs, eyebrows, hairpieces, fashion' you'll find a discussion about swimming in wigs. I think you might need to have no hair at all and use a vacuum wig to swim in but maybe there are other options. I think I'll just get a swim cap - possibly with a fringe attached!
I have had FFA for over 8 years but I'm not sure exactly when it started as it was so gradual that it was some time before I noticed it. Oh, by the way, if you Google 'swimming in a wig' you will find more information.

Comment by Jules UK on May 25, 2013 at 7:12am

That's interesting, thanks Kath. Are you able to sleep or swim in your hairpiece? And do you mind me asking how long it has taken to lose so much of your hairline? I know this is different for us all -my hairloss above the ears has taken about 8 years but the front is thinning very quickly.
Rebecca, I really feel sad for how you're feeling. This FFA is truly horrible and you describe so accurately the feelings we all experience at times. I wonder whether we'll ever accept it; for myself, the best I can manage is to ignore it, once the make-up is on, by keeping busy. Sounds tame perhaps, but it's helping. Good luck with your new derm!
I'm going to see Dr Harries on Friday 31st, so if anyone has any questions......... I'm going to ask about body hair loss. I'd only lost underarm hair, but it's grown back! Just under the right arm!! Weird. And eyelashes - which are now stubby and patchy.
Doxycycline hasn't helped so I'll probably start Panquenil this time. My optician says that it's used as long term treatment for rheumatoid arthritis and if eye problems are detected, they can be reversed if discovered early enough. So he'll see me every 6 months.
Have a good long weekend everyone. Enjoy the sunshine! Julie x

Comment by Kath UK on May 24, 2013 at 4:53pm

Hello Donna - nice to hear from you. My hairpiece is an Ellen Wille piece and is not a full wig. I think it's quite flattering. It has sticky tape strips that attach it to my forehead and three little clips at the back to attach it to my hair. It's a lace front piece so the hairline looks pretty natural (my own hairline has gone back over 2 inches now.) I find it comfortable to wear but we are having a very cool May in Scotland (temp. here today was about 12C) so heat hasn't been a problem so far. I'm not sure what it would be like to wear my hairpiece in hot summer weather. (It seems there are advantages to Scotland's cool climate!) Hope this info is some help. I'd suggest you go to a good store and see what they have to offer in the way of wigs. You might get a pleasant surprise. My hairpiece has really boosted my confidence.

Comment by Donna on May 24, 2013 at 1:58pm

Kath - can you tell me more about your hairpiece? My hairline is so far back on my forehead but I don't want to use wig yet. How does it attach? Is it hot? (I know you look hot but is it warm to wear in summer?)

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