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.

Jane, if you had an upset tummy with hydroxychlorquine sulphate I suspect it is because you had the generic make of the drug, if you ask to try plaqeunil it should not give you problems. This is hydroxycholoquine sulphate by a different manufacturer. I always make sure I get this brand because it is gentle on your tummy. XX

Celia regarding your post on medication I have been taking hydroschlorquine for over 6 months twice a day and it appears to be controlling my hair loss along with the nightly use of regaine! I never suffered with a red scalp externally so cannot comment on any improvement there! has anyone had a biopsy with Dr Harries he asked me to have one when I initially started seeing him but was too afraid it may leave further damage but have often wondered what it would show?My optican told me not to worry about my eyes and hydrox. he said its very long term use although I would be afraid to come off the drug. Nioxin shampoo and conditioner makes my hair feel much thicker and is especially for hair loss and thining hair, hope this info is of use. x

EYELASHES - When we met up at Celia's for lunch last month we had a conversation about our eyelashes. I knew mine were not as long/thick as before but since then I have really looked more closely and I can see I am starting to lose eyelash from the lower lid on the outer end. I am going to get my eyeline tattoed in a couple of weeks time so create an illusion of having more eyelashes. I am not going to have a thick line, just something quite subtle to enhance my eyes. I did notice the first time I had my eyebrows done (November 2011) that I did not experience any further hairloss in that area. I don't know if the act of tattoing the skin somehow stimulates it and helps to stop further hairloss but I am hoping that having my eyeliner done now whilst I still have some eyelashes might stop further shedding. I will post photos after I get it done. XX

The beautician told me of a product called revitalash for helping eyelashes x An American doctor invented it for his wife who lost her eyebrows and eyelashes to treatment for cancerx

3M DROPS from Philip Kingsley.......... I tried to order some more online today as I have done in the past but was told there has been some legislation banning PK from keeping the 3M drops on the premises. Apparently one can only get these on prescription now from PK's clinic. To do so now I would have to have a follow up appointment (cost about 115 pounds)The drops cost 50 pounds a bottle. Heidi - I remember that you used to use PK's products - any ideas on how to buy the 3M drops ? I told the receptionist on the phone that there was no point in a follow-up apt with a trichologist as I am already seeing a dermatologist. The 3M drops have minoxidil in them - still not sure about trying Regaine, but I know that some of you have had some success with this.

Hi. I hope that everyone is well. Today I went to my local dermatologist.I hadn't planned to as I see Dr Harries and also wasn't sure about my local derm. However I'm glad that I did. He was helpful and told me a few things that I didn't know. He feels that Doxycycline is the best way forward with this disease if it's tolerated well by the person taking it. He said that less and less people are being prescribed Hydroxcloroquinine (I am not sure if he said that to me to make me feel better about not taking it) He then prescribed me Dutasteride which he said is been used more. However I may have to pay privatly for it due to licensing of the drug. He says that he feels that pollutants such as the spraying of insecticides may well have caused this disease and that they are doing more and more studies. He hopes that towards the end of this year they will be getting as many people involved in the studies as possible. He said that due to the conection with lichen planus they (dermatologists) were hopeing to study hair, nails and the vulva.He seemed very enthusiastic today and when I told him that I had seen Dr Harries becuse I felt that he had left me too long after giving me such life changing news he said that they were now putting on more clinics and that he was meeting ladies with this disease on an almost daily basis. xx

Hi Liz - good news that you are now reunited with your derm - I remember you saying there was a long wait between appointments. When I saw Dr Harries last time - he suggested Dutasteride and said that it was growing in prominence in the literature about hairloss, and gave me a leaflet about it. It says 'This medicine is for men only. It must not be taken by women, children or adolescents.'
It's used as you probably know to treat men with an enlarged prostate. I read the entire leaflet. I've copied a piece below for you.........................

Originally Posted by WomensHairLossProject View Post
Are doctors starting to prescribe Dutasteride for the treatment of women's hair loss as well? I know that Propecia is prescribed for some women, like those not planning to have kids anytime soon, but I just read today that a woman is taking Dutasteride so I'm curious if this is common ??

If doctors are starting to prescribe dutasteride for women with hair loss, it is certainly not “mainstream.” There have been several studies examining the use of finasteride in women with hair loss and the study with the most scientific validity essentially showed that there was no significant response. DHT has not been proven to be a mediator of hair loss in women and therefore its reduction, whether by finasteride or dutasteride, does not make sense as a treatment. However there are a few anecdotal reports of some women responding to finasteride. So the shorter answer is no, it is not common to treat female pattern alopecia with dutasteride. I would stick with the proven treatment of minoxidil.
__________________
James A. Harris, MD, FACS
Member, International Alliance of Hair Restoration Surgeons
..............................................................

It's interesting that your derm is seeing more people with FFA. There was no mention of paying privately for the drug.

I hope you get on well with the Doxycycline, Liz. Best wishes. x

Hi Celia. Thanks for the information. I tried Doxycycline but I kept getting thrush so I gave up after a couple of months and I used the Minoxodil but it made my eyes burn...The things we are willing to try in the hope of keeping our hair! x

Liz - are you going to try the doxycycline again - I stopped because I started getting a rash on my face. I am taking hydroxychloroquine now and am losing more hair than before - confusing to say the least - have you tried Rogaine ? x

Hi all
Celia_ I used Philip Kingsley products about a year ago but it was just the shampoo,conditioner and tonic not the 3M drops. I got mine online but Charlie works in a salon who stock some PK products so you could try a local salon, but I don't expect they could prescribe! Sorry I'm not much help! If you have already been to their clinic can't they give you a repeat persciption!
Jane you sound like you have had a nightmare! I wish you well, your luck must change soon!x

Sorry - just reread what you said and you have tried minoxidil (in Regaine ?)

Hi Heidi - no repeat prescription - unless I go into London and have another expensive consultation !

Liz, thanks very much for your info. I really feel that the trigger for FFA is something in the environment that we are all in contact with, like your derm says insecticides or something similar. Liz, I nearly fell of my chair when I read your post... I didn't know my vulva needed to be included in a study of FFA... Good grief what next... I hope this is just the ladies with lichen planopilaris... The fact that so many women are now presenting with FFA is very sad however the upside for us is it is being seen as a condition worthy of study so lets hope we can get a more treatment options soon.

Hydroxychloroquine sulphate - I have been taking 2 pills a day since 6 March and the sides of my hair and temples have stayed the same but more front hairline has continued to shed hair. I see Dr Harries on 12 July. I know this drug takes a few months to get into your system so I am giving up all hope but it is interesting that Liz's derm has said doxycycline is a prefered treatment option if tolerated.

Hello everyone. First time I've had a chance to post anything or even read your recent posts. My father is terminally ill and has deteriorated rapidly in the past two weeks. I have been helping to care for him. It really puts things in perspective re my hair loss. I'm carrying onb taking Planquenil and using Dermocvate scalp lotion every other day which is the treatment my derm prescribed. Howevedr, my scalp is still inflammed. I am very pleased with the eyebrow tattooing I had done recently. For anyone who is concerned about having it done, I'd say Go for it, but make sure you do to a very experienced practitioner. It has improved my appearance a lot and even better, I no longer have to worry about applying eyebrow pencil. Saves a lot of time!
Great to hear that there is to be more research into Lichen Planopilaris and FFA.

Hello all, Unfortunately, I have mild hypertension and have been taking 40mg of Micardis for several years. I have FFA so it is clearly not helping this scenario. Perhaps a higher dose is required but I can't imagine doing so as B/P will then be lowered to an unacceptable reading. All these drugs that are mentioned seem to add more problems. I wish there was a natural approach, Yes, I know, dream on.!!

Caroline, I hope your father is as comfortable as possible at this time. Lots of love to you and your family.

Paula, thanks for letting us all know what Sir David Fenton has prescribed to you and I think it is definately viable that some of us can meet him in London.

Carol - that was funny about the onion juice - I'll try it on my husband first - he has a good head of hair.................

We ladies in the south east should meet up again soon I hope.

And for the west country ladies also , please - I would love to host another get together in the Autumn. I know it was a mission for Caroline and Heidi as well as Julie to get over here - but - we shall see..... Liz - I hope to meet too soon. Hope all is going well for you.

Today I caught sight of myself on the car window as I was getting in - what a shiny pate !!!!!!!!on the forehead !

I wonder if I might ask if you haven't done so already - please add where you are from / continent / or a bit more specific if in UK after your name eg London/ MC - whatever - I find it quite helpful. Thank you - I hope you don't mind me asking. x

HYDROXYCHLOQUINE SULPHATE AND EYESIGHT.

I have been wearing reading glasses for 4 years. I have not had an eye test since September 2009. I went to an eye test today as recently I have experienced eye strain whilst reading and because this drug can on rare occasions affect eyesight I wanted to get it checked out.

I went to Vision Express where I had my previous eye test. I do need a stronger prescription for reading - but this is only a normal amount of change that would be expected over a 4 year period. I said I was on this drug and they knew exactly what the side effects could be and were very considerate. I was given an excellent eye exam and told to come back in a year rather than the usual advice of every 2 years to get a check up. I was told that it is very rare for the drug to effect sight and I was advised to do the AMSLER RECORDING CHART eye test on myself at home every 2 weeks as a way of keeping a careful check on my vision. I was given a print out of the test but you can print a copy out and have instructions on what to do

www.garetina.com/amsler-recording-chart

I am really impressed with the care I was given when I disclosed my use of this drug and the thorough eye exam optometrist gave me. It has definately given me peace of mind.

Rebecca, 'no' my hairloss is not as fast as this. Is your derm certain this is FFA and not something else? It is very distressing for you to lose hair at this fast rate. I just wonder if this is a reaction to medication you have been prescribed because some of these meds for hairloss bizarrely can have hairloss as a possible side effect. I am very sorry you are having this experience. XXX

Can anyone recommend the best type of wig for frontal fibrosing alopecia? I need something to cover the sides and top, but have got hair at the back of my head.
Feel pretty depressed about the whole situation! Am getting increasingly self-conscious about windy days and people staring at me!
Also what is the view on eyebrows? Mine have vanished. Is it worth trying a tattoo?

Hi Everyone, Well, I am still really struggling with the latest flare-up of this alopecia. I don't know if it is still going or not. I was put on the topical steroid, Clobetasol, and have been using that for two weeks, but over the last week, I have had a horrible feeling of fatigue (I have absolutely no energy...very unlike me), light-headedness, dry eyes/sort of blurring, some stomach issues and even some minor shortness of breath when exerting myself. Basically, I just feel horrible almost all of the time and just want to lay down and nap (which I can't since I'm trying to work). I just spoke to Dr. Strick in Santa Monica (who prescribed it) and he says no way could it be causing these symptoms. Anyway, I was wondering if anyone on here has had any side effects from topical steroids? Maybe it's depression, but I don't know...

Hi Rebecca. I was prescribed oral steroids for 8 weeks because I was losing my hair at quite some speed.
Last Thursday I was prescribed some medication by the dermatologist and have since found out that it's going to cost me £200 every 6 months. To be honest from what I read on here I wonder if medication does any good at all. We all seem to continue losing our hair, despite pumping our bodies full of drugs. The fact that we have this condition in the first place suggests to me that we all have sensitivities to something. If we then pump strong medications in to our body, I wonder if we are doing more harm than good to a system that is already struggling. Perhaps we are all grasping at straws , because it's better to take medication and live in hope than to give in and see what happens. If we are all going to wear wigs eventually why take the medication anyway? Sorry if I'm being controversial but this is how I feel at the moment.