Pam thanks from me too. I have signed up for the CARF newsletters. i like the practical advice re diet and supplements.

Pam, thanks for the CARF link. Really useful information in their newsletter. Shall definitely be signing up.

Ladies that are taking hydroxychloroquine.... I asked my GP for a prescription and he gave me one with no problems. When I went to a local chemist to get the prescription filled I asked for Plaquenil not a generic version of this drug (because I know some people have tummy upsets with generics) he has Plaquenil in stock but advised me the patent on Plaquenil has now run out and the generic version of hydroxychloroquine sulphate are being stocked in many chemists. Plaquenil is available but you may need to ask you GP to specify on the prescription that you want this otherwise a generic version may well be dispensed. I know some ladies are using generics with no tummy upsets so it is not absolutely necessary to have Plaquenil but some of you may prefer it.

I am off on my hols tomorrow. Taking buffs for the beach and silk scarves for the evening. I am packing one wig just in case, the one I am wearing in this photo. I am so used to wearing wigs now it seems odd to be without them. I will catch up with all your news in a weeks time.

Have a super weekend. xxx

Have a wonderful holiday Debs and thanks for all your information on all sorts of topics regarding FFA ! Sammix

Debs, oranyone else who may know - what is a buff???

Pam, thanks from me also. I have signed up for the CARF too.

Hi Alice, a 'Buff' is a sort of versatile head/hairband you can wear in various different ways. Look up Buffs headbands on the internet. There are a lot of patterns to choose from and their website will suggest ways of wearing them.

Have a great holiday Debs, I'll be going on mine next week. I can't wait to get some sunshine,hopefully! Hope everyone is ok.

Sounds like lots of people going on vacations here. I am leaving this Saturday driving with my family to South Dakota - the Black Hills, Badlands, and Mount Rushmore. It's such a beautiful place and I can't wait to go back there again. Hopefully we'll have good weather there and have a fun & relaxing time. Terrible storms and tornadoes went through Oklahoma yesterday destroying schools and houses; very sad. Hope everyone here has a good week!

Hope all you holidaymakers are having a great time !
I'm at home creating my garden but will get away once all is done. When I saw Dr Harries the last time I came away with only half the hydroxyl.......that I needed for 2 months - went to the GP here and got Plaquenil as suggested by Debs - easy peasy and yet - when I asked for this a few months ago I was told they were not allowed to prescribe it.........have had no inflammation for a few days - I am putting it down to the turmeric I've been taking. Bought some new vits for hair skin and nails and they contain everything I've been taking separately so I will just take that and the turmeric. I'll wait and see what happens. Karen - your holiday sounds wonderful !

Rebecca , I'm so sorry, it is like a nightmare when you first discover your hair just coming out so easily, realizing you have large bald areas to try to hide. I've mostly come to accept my hair for the way it is and become better at concealing it, but it still is not easy. I know it's not easy to do but try not to obsess about it too much, that will just cause more stress and may make it worse. Try to concentrate on the good things in life, family, friends, hobbies you enjoy, soothing music. Just know that you are not alone here, we've all been through this.
And Hello to Mary, glad you are here.

Rebecca, I know in my case some of my hair loss was gradual where I didn't really notice it til it was gone, but at at least one time I had hair pulling out at my temples very easily right during a very stressful time when my husband was in the hospital with heart problems. I was shocked to see it coming out so easily, but figured it was due to the stress of my husband having a near heart attack since it happened within a few days. He is much better now, thankfully. Since then, the rest of my hair loss has been more gradual, just finding lots of hair in the drain and seeing how thin it was getting. And then sometimes I think the FFA stops for a while and calms down. I'm seeing a new Dermatologist who I hope will be able to help me. He's is supposed to be going over my records from another Dr and calling me back soon. I hope he has good news!

Rebecca, I really sympathise with you because a similar thing happened to me. It's horrid, I know, and you feel so helpless. In my case the new patch of hair loss that suddenly appeared behind my ear has stabilised though my hairline at my forehead is still receding. I'm now at the stage where a hairpiece is my only option though I've resisted getting wigs up to now. One nice thing is that my new hairpieces have brought me some unexpected complements and my granddaughter is begging to be allowed to borrow one!

Rebecca - very sorry to hear this. I know it is small consolation - but you are not alone.

I have had the steroid injections and I haven't got a clue as to whether the effect has been good or not.

This is an awful disease - unpredictable, incurable and seems to be arbitrary as to whom it descends upon. I think stress of whatever kind must send the body into some kind of preservation shock. My daughter told me of a friend's mother who lost her eyebrows instantly when her husband died of cancer.

Rebecca - the injections might help but they do leave some indentations - but if you have fringe they can be hidden - and really I wouldn't mind betting that nobody would notice.

It is almost a year since this FFA site began. I keep wondering how long we can have sooooooooooooooo many pages stored. A few of you were here in the very early stages and have thankfully continued to communicate. Recently a few of us ladies in UK got together and I can't emphasise enough how helpful that can be. It is good to communicate over the internet on the forum - but - really brilliant to chat face to face.

Holiday weekend in UK - hope you all enjoy it ! X

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.

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.

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.

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

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

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

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.

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.

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

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

I forgot to say that I do think turmeric has helped reduce the inflammation around my forehead. I have no inflammation at the sides of my head or above my ears and yet the hair continues to disappear. Oh, for a miracle !
Flying kites with our grand children at the weekend was the very best therapy, just great to switch off for a while.

Jules, I wish you all the best on Friday. xx

Jules - great news about the eyebrow tattoos - there's not much that can lift the spirits with this but I certainly found the eyebrow tattoos came close to it ! Just to wake up in the morning and not feel you have a 'bald face' as well as the other stuff going on is really good. Make sure your tattoo person make it look like individual hairs not a dark band - I am sure they will know what they're doing - I hope you get the alopecia discount - one of the perks....... x

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.

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.

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?

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?

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

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