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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

Comment by Plain Jane on June 4, 2013 at 11:15am

I was diagnosed with FFA (lichen planopilaris)nearly a year ago (my profile pic was taken right before the biopsy), but I'm new to Alopecia World. I'm encouraged by the care and support evidenced among the members here. I don't know anyone personally who has alopecia, and while my friends and co-workers try to be compassionate, they can't really understand what it's like to have FFA. So it's been isolating for me. It's wonderful to find a place where people gain strength and comfort through this roller coaster ride of hair loss.
I'm not really one to "reach out" to others, but at this point I have exhausted every medical option and still have a blistered, sore and itchy scalp with less and less hair every day. I look forward to the day when the lichen planopilaris "burns itself out" as they say, and I can have an un-inflamed scalp again, hair or no hair.
Thanks to all of the members of this group who take the time to share their stories and support others. The encouragement and advice you give are so valuable.

Comment by Alice on June 4, 2013 at 7:36am

For those of you interested in natural approaches, I want to suggest drinking oolong tea. I read that it has helped people with eczema and psoriasis, so figured I'd give it a whirl. My scalp feels much better and is less red. I drink a large mug each morning, using 2 tea bags. I'm also taking turmeric and ginger capsules and am on Plaquenil twice a day. Oolong tastes similar to green tea.

Comment by ElleMN, USA on June 3, 2013 at 9:57am

...cause not campuses...

Comment by ElleMN, USA on June 3, 2013 at 9:56am

Carrageenan is in the news here--another possible source of inflammation. Those of you in Europe may not have to worry about this food additive found in dairy products but those in the US should be aware of it. I avoid dairy because of it's potential to campuses inflammation for me but now I see carrageenan in my almond and coconut milks. Ugh...

http://articles.chicagotribune.com/2013-03-18/health/ct-met-carrage...

Comment by Paula uk on May 29, 2013 at 3:04pm

Jules,
Best wishes for Friday.
Good news on the eyebrows.x

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