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

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).

Liz - I use Turmeric Rhizome made by bio health.

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

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 ?

Rebecca - how did you get on with your derm visit ? A little while ago you were upset with hair just disappearing - I hope you have found a bit of optimism and feel a bit more in control if that's possible. x

Rebecca, dapsone gel (brand name "Aczone") was developed for severe acne. It can be effective for rosacea, as well. Because it acts as an anti-inflammatory, my derm suggested I try it during LPP flares. Since it's prescribed off-label (my dx is FFA, not Acne) it is kind of expensive. And no, it has not stopped the hair loss. But my goal is to calm the inflammation, which (I hope) slows the destruction of the hair follicles. Once the scar tissue has formed, hair can never grow back... at least that's what the derm told me and what all the research indicates.

Welcome, Jane. It seems as though some of us have more trouble with scalp tenderness and itching than others. When mine was at its worst, I found a couple of things to be helpful: Nature's Gate Tea Tree Oil Calming Shampoo & Conditioner, as well as tea tree oil applied directly to the scalp (all available on Amazon). The oolong tea has also made a difference, I think. As I said earlier, I also take [generic] Plaquenil 2x/day and turmeric & ginger capsules daily. Elidel cream has helped my eyebrows grow back.

A little off topic, but Alice's comment about Tumeric and ginger is great. I have Lupus, another autoimmune condition, and had a very severe flair up over the past few months. Out of desperation I tried a "magic tonic" that a client gave me. It is lemons, garlic, ginger, turmeric and honey. It was amazing how much it calmed my inflammation and I now drink it every day for lunch. I am a huge skeptic and have tried many alternative natural treatments all with failing results. But this one really has made a difference.

May we have the recipe please Chris. Thanks !

Chris - I'm interested in your "magic tonic". Can you share the recipe/amounts of each?
Rebecca - I just started using Elidel cream about a month ago on my eyebrows (for regrowth) and along hairline (for the bumps). To early to tell of any changes. I have not heard of actually putting it in the hair though.

Hi, Alice. Is the shampoo drying?

The recipe I use is a bit different than the one the client gave me, I take one lemon, two cloves of garlic, about the same amount of ginger, 1 teaspoon turmeric, one tablespoon raw honey and one chunk of jagery gur (an Indian sugar) chop it all and add water and ice. If there is enough sweetener it actually tastes good, but isn't bad with less sweetness. The Gur is an unprocessed sugar that is actually healthy and diabetics can eat it.
The original recipe says drink 1/2 cut twice a day but mine makes about three cups. The original recipe also says you can add ingredients like Aloe Vera juice. I did end up having to have a cortisone infusion, but this recipe made an amazing difference in my pain levels. Since all ingredients are anti inflammatory it should be beneficial to any autoimmune condition.

Hi Celia I dont intend to stop using it as it has made such a big improvment to the front part of my hair it only takes 2 mins to apply at the front of my hairline and when I compare a photo six months ago I am amazed how thicker my hair appears. I live in Altrincham nr Manchester my medical history is on my site Sammi

Just been reading the reports and case studies of theScottish dermertology hair conference FFA mentioned in many of the cases makes interesting reading though quite technical!

Pam, When I first started using the tea tree oil shampoo & conditioner, I did not notice it to be drying. It was certainly much less harsh than the nasty Rx shampoo my derm gave me. This past winter, my hair and nails became very dry and brittle. My scalp had calmed down some by then, so I started using a thickening shampoo & conditioner for more moisture. Now, I sort of alternate between the two, using the tea tree oil when my scalp feels itchy and the other when my hair feels dry.

Hi everyone,I have just got back from Majorca it was so nice to see some sun, hopefully we're in for a good weekend!I drank far too much and put on 4lbs and hair loss was the last thing on my mind, it was great!
Hi to all our new friends that have joined us since I was last on the site, I hope you will find this as comforting as I do. Chris I was interested in the receipy you have given us, do you think it would work without the garlic, I do love it but I think my husband would divorce me if I had it every day!!
I don't know if anyone else has noticed that their skin is more sensitive to the sun. I have never had prickly heat but i suffered with it this holiday, I suppose I have no hair on my arms or legs so I suppose it is different now.

Hello Rita - welcome to the group - so sorry you have this disease. I hope you are able to find this part of the forum to write on and read our posts too. As you can see there are now 72 members of this FFA group although many have stopped posting but perhaps they continue to read. I use the UK version of clobetasol and take vitamins as well as hydroxychloroquine although I am not a big fan of medication and don't think it's helping in fact if anything has changed I would say the diffuse hair shedding has worsened since I started that med. Try and stay positive - we all hope for a cure to be found soon. x

Hi, Rita
I was diagnosed last year, too, in May. I had some diffuse thinning for years, but I believe the FFA was triggered by the stress of being diagnosed with malignant melanoma on my face. I had surgery to remove it in late 2011 - had 140 stitches down the left side of my face and a life-changing scar. As soon as I learned to recognize myself in the mirror again, my scalp became inflamed and blistered so I began seeing derms. Finally got a biopsy in May of 2012. Initially, I was put on finasteride (propecia) doxycycline, anti-malarials and Clobetasol foam. The foam only worsened the inflammation, and my derm switched me to protopic, which is an ointment and difficult to use in your hair but did seem to speed healing. The anti-malarial (hydroxychloroquine)gave me such a gut ache that I couldn't eat, so I discontinued that after 2 months. I recently stopped the finasteride because, after 10 months, it caused terrible dry eye syndrome, for which I was having to use Restasis and all sorts of eye drops. I tried discontinuing the doxy. too, but after 1 month without it, the alopecia flared up and blistered along the left temple and around, behind my ear, so I started taking it again. Now I am on a low dose of doxycycline and the pro-topic. I use ketoconazole shampoo (also an RX) to help control itching. I still have some painful sores that make it impossible for me to wear any of my wigs, so I'm wearing soft stretchy headbands from "Free People" to cover the areas of recession. (My profile pic was taken over a year ago- I have much less hair now.)For several years, I've been on a low-carb diet, but in January this year I switched to Paleo and stopped all gluten. Then in March, I stopped all dairy, all legumes, and all processed food, as well. No alcohol. No sugar or artificial sweeteners. Only organic meat and vegetables with some fruit. I have lost 15 pounds (which I wasn't trying for) but there's been no change in the alopecia. I have been taking all kinds of vitamins and supplements, but these don't seem to have made a difference either, except in my checking account balance. However, after all of this fiddling with my diet, meds. and vitamins, etc., I now have to see a hematologist on Tuesday because my white blood cell count has been steadily dropping and I now have neutropenia - so the doc is concerned I've developed another immune issue..... once you have one, you are a greater risk for having a second.
I'm so sorry I don't have better news. Maybe you will have different results.
This diagnosis is devastating. At this point, though, I am ready to stop living my life around it. I'm just tired of focusing on it. Hopefully it will "burn out" as they say.
I wish you all the best.

Thanks Jane, I was hoping to hear someone had some success following the Paleo Diet (strict anti-inflammatory), perhaps someone else has tried with some level of hair restoration. I can only hope. I have enlisted my husband to follow this really restrictive diet with me. It can't hurt except for the cravings, I'm sure.

Information on 7th world congress for hair research abstracts - Jour nal of investigative dermatology sorry no web address but the title will get you there! Trawl through to FFA abstracts!Sammi

Good evening everybody. I've just been reading posts from you. If I didn't have communications from you I would hate it. When I was first diagnosed and started this forum - I think my first plea was - something like - 'please someone talk to me' ! Thankfully it worked. There are new members joining us, steadily. Hopefully we can find a way to reduce the inflammation and so - we assume - lessen the effect of scarring and loss of the hair follicles. Jane - you are right - try to - well - not focus on it - as that's not possible - but try to focus on other things, friends,family,other interests.
I'm a retired teacher - I so miss the workplace and the pupils, however challenging, but right now - I don't have the confidence to get back in there !
On the subject of medication that we have been prescribed - please - has anyone been able to attribute any improvements in the condition, - to the use of meds ? x

Pam, the thickening shampoo & conditioner that I am using at the moment and like a lot are the L'Oreal EverStrong line in the turquoise tubes. They are sulfate-free, claim to be good for your scalp, and smell like rosemary and mint. They are readily available in most grocery/drug stores, reasonably priced, and often have coupons in the Sunday paper.