Comment

Comment by Celia on May 28, 2013 at 5:22pm

Good luck, Jules - I hope it goes well for you ! I will be thinking about you.

Comment by Jules UK on May 28, 2013 at 1:21pm

Hi all, I see Dr Harries on Friday, so I'll mention the points raised too. X

Comment by Celia on May 28, 2013 at 1:07pm

Debs - I am see Dr H on June 27th - will make a list. Any news from that conference in Edinburgh ?

Comment by Debs on May 28, 2013 at 8:04am

And.... just checked out the BAD website more thoroughly. ACITRETIN is a drug, tablet form, that can be used to treat lichen planopilaris, since FFA is a varient of lichen planopilaris I think it is worth us asking our derms if this can be used if we don't respond to hydroxychlorogquine sulphate. Again, anyone seeing Dr Harries can they run this drug past him please.

Comment by Debs on May 28, 2013 at 7:46am

DAPSONE - Rebecca, I have just looked up this drug your new derm has mentioned. It is an antibacterial originally used for leprosy. The British Association of Dermatologist has info about Dapsone on their website

www.bad.org.uk

If anyone is seeing Dr Harries can they please ask him if he has used Dapsone for FFA. I see him next in July. It would be fantastic if we have another drug to use on this condition.

I did manage to switch off on my holiday and didn't think about my FFA. It was great to be away, a change of scene really does help you relax.

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.

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