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Comment by Celia on June 5, 2013 at 6:47am

That's good Sammi - I believe the thing with Reagaine is that you have to continue using it - don't stop - or any new hair disappears. Are you living in London, Sammi by any chance ? Have you been to any of the clinics there, that is if that's where you are. Are you on any medication right now - if so - any side effects ?

Comment by sammi on June 5, 2013 at 6:15am

Hi Cecelia regarding regaine, brand name Dr Harries asked me to try it had increased my growth of hair Ionly apply it was along the front band of the hairline, looking at photos my fringe looks fuller several months on! Sammi

Comment by Celia on June 5, 2013 at 2:31am

Liz - I use Turmeric Rhizome made by bio health.

Comment by Debs on June 5, 2013 at 2:07am

Jules, yes please do go ahead and be a spokesperson for us with Dr Harries, it will be very useful for him to get our input.

Tumeric - well, it was Dr Harries that mentioned to me that curcumin in tumeric was proven to help with other autoimmune conditions, he did not tell me to take supplements but of course any whiff of hope and I tend to jump on it. Liz, I take 2 tablets a day with food, I order mine online from a company in the UK, veganicity and the tablets are called 'tumeric extra', they also contain ginger (another anti-inflammatory, bromelain and piperine which are supposed to increase bio-availability).

Comment by Celia on June 4, 2013 at 5:51pm

Hello all and welcome to Jane. Sorry you too have been through the mill.
Thanks for the update Jules - good news for your daughter - keep using the pencil a bit longer - it will be worth it in the end to have the eyebrows done !
Kath - when I left M/C the last time after seeing Dr H - I came away with Quinoric - but not enough to last the 2 months before seeing him again - so I went to the GP who has the report from Dr H recommending hydroxy........I took it to the chemist and actually asked for Plaquenil which he gave me - no prob. I have found I get headaches since taking it so I'm afraid I don't always take 2 a day. I did notice that hairloss is listed as a side effect of both Plaquenil and Doxycycline. Puzzling. Each time I brush my hair especially at the front I have a lot of hair in the brush - awful ! Is anybody still using either 3M drops topically or minoxidil in any form on the scalp. It is expensive and I am not so sure it works anyway. I think it was Debs who recommended Plaquenil and not the other form of hydroxy....
I think my inflammation at the hairline is less now I am taking turmeric. I will try the oolong tea, Alice. Do we all feel that controlling the inflammation is controlling the disease - I am not so sure since some people have this condition but without the inflammation.
Jules - I think it would be great if you did the feedback to Dr H - perhaps we will find that this forum will really have a voice and hopefully some impact on accelerating understanding of this strange disease ! x

Comment by Liz on June 4, 2013 at 5:50pm

Hi :o) Those of you who are taking tumeric, how do you take it? Do you buy a tablet or use the same powder that you do in cooking? xx

Comment by Jules UK on June 4, 2013 at 4:53pm

Hi Jane, I just asked about oral dapsone. I didn't know it was also available as a gel.
Eyebrow tattoos on hold, incidentally. My daughter has secured an unpaid internship at a London architect practice. There's accommodation to pay for over 6 weeks! Ah well, I've waited this long, what's another few months? X

Comment by Plain Jane on June 4, 2013 at 4:20pm

Thanks for the warm welcome, Jules, Rebecca and Kath. I'm on the other side of the pond from you, but my doc prescribed dapsone gel, which I have used off and on 10 months. Just curious, were you talking about adverse side effects with oral dapsone or with the topical gel?

Comment by Kath UK on June 4, 2013 at 12:49pm

Hi Jules, thanks for all the information. Dr Harries is a bit too far away for me to visit but it seems that my dermatologist is prescribing the same medication anyway. I'm taking turmeric and hydroxychloroquine like you but I've lost a lot of hair and so far the FFA doesn't show any signs of 'burning-out'.
Good luck with the hydroxychloroquine. I wasn't given Plaquenil - my tablets are called Quinoric and I've been taking one a day for 4 weeks and have had no digestive upsets so far. I will go on to two tablets a day after my next blood test if the test is OK. I take turmeric too but so far I don't see any improvement in the skin irritation or the hair loss. Ah well - wait and hope.
Welcome, Jane. I'm sure you'll find this group very helpful and friendly. It's great not to feel so alone with this problem, isn't it?

Comment by Jules UK on June 4, 2013 at 11:37am

Welcome Jane! Where are you from? You will find this forum really informative as well as therapeutic.
I saw Dr Harries on Friday. Sorry for the delayed report but I've had a busy time collecting my daughter from uni and then getting her on a plane to Iceland. Just back from Gatwick.
Re Acitretin - it's not appropriate for our sort of LLP inflammation. There are 2 types and ours is not treatable with this drug.
Re - Dapsone - this again is not a drug he would consider for us and its side effects can be extreme. Such as breaking down red blood cells.
Re- supplements. He was interested that many of us are now taking turmeric and would like to know if we think it helps.
Re- eyelashes - he's going to post info to me about a glaucoma treatment that will regrow lashes. He can't prescribe it and I'd have to ask my GP to prescribe as if I did have glaucoma to get an NHS prescrtipn. Not all GPs will do that. So we'll see. I do know of this but had hoped he would prescribe it or me. Am starting Plaquenil.
Importantly: Dr Harries is recruiting patient reps for an alopecia steering group and would like an FFA sufferer. It would mean attending meetings and feeding info from our forum. I'd be more than glad to do it, but thought I'd ask here in case anyone is really itching to take on the role.
Hope you're all enjoying the sunshine at last! X

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