Simone, I've been putting a very small amount of Elidel cream over the brow area every night. I started out using it twice a day but didn't like the way it worked with my brow powder/pencil. The only side effect I have noticed is the the skin under my brows is sensitive if I get the water too hot when I wash my face. I first asked my derm about it after reading an article about a woman in Greece whose FFA was successfully treated using Elidel topically on the brows and Avodart orally. I wasn't ready to try Avodart, since it's approved only for men w/ prostate enlargement.

Alice, I asked my derm for Elidel - turns out the very greasy and goopy Protopic she had given me for the scalp is basically the same thing. I'm much happier with the cream, though I have to say, the first few lines of the "possible side effects" info gave me pause. Thanks for the tip. I'm staying on Plaquenil for now. Love the new hair, Debs!

I am having burning pain and bloating in my stomach since I started taking hydroxychloroquine sulphate. Worse after I've eaten. I haven't been given Planquenil, my medication is the generic form (manufactured by Blackrock Pharmaceuticals). Perhaps this is the reason? I suspect I've been given it because it is cheaper than Planquenil. I'm going back to my GP to ask for Planquenil as I read somewhere (can't remember where!) that it is easier to tolerate. Anyone else had the same side effects?

Simone, I put the cream all over the brow area. It spreads easily, so takes just a tiny amount.
A belated St. Pat's wish to all of you: "May the wind be ever at your back." I think this old Irish blessing may have special significance to those of us with FFA. :-)

Caro, last night I took my plaquenil with only about 3 mouthfuls of milk and I didn't get any reactionn, usually I take it with a proper meal (breakfast and then dinner) so I think you are right and your generic version is a bit tough on your tummy.

Hi - sorry I didn't get to answer eariler. My dermatologist is the one who said the hair loss has stopped "for now" but to continue the Hydroxycloride. She will check again in 3 mos.
Sorry to be so vague but I HATE looking at my forehead and avoid
it at all costs. I am wearing long bangs so really don't need to
see the loss. As we all know these things can be temporary so I
am trying to think positive.
Eyebrows - don't know why some are growing (mind you it is only
some - I can count them). My dermatologist suggested adding dabs of Clobasol to the eyebrow area to see if that helps them also.
The Probiotics I get at Whole Foods, the refrigerated ones. I
think any health food store could suggest good ones.
I really don't know how long I have had the FAA but the eyebrows
and body hair loss started at least 3 years ago. I never looked
at the forehead. But that said I can only go by the eyebrows -
this is the first time in 3 years I have seen ANY growth and that has to be the Hydroxycloride. Possibly the probiotics and possibly
a little more sleep and less stress and possibly the DHA Shampoo and conditioner. Who knows? I hate to guess as I am happy to be in remittance. Will see in 3 more months.
So much good info on these posts. I am very proud of you all
that are wearing wigs - they are so attractive but I don't think I could tolerate one on my head. But I love the scarf ideas - I usually wear a hat when wind is blowing or bangs are having a "bad hair" day. Probably a little odd when I am inside but who cares?
Good luck everyone.

Jules, I'm still gluten-free. It's helped my skin on my forehead a lot,but not so sure about the hair-loss. Hard to know, as I am also taking plaquenil and eating better all the way around. Since some daily hair loss is normal, it's always hard to know. Still have doll's hair for sure - nice description - but it's hanging on for now and I can still get away with a comb-over.

Judy thanks for the info on your probiotics, I will see what I can find in my local health food stores. XXX

Debs thanks for the feedback on Planquenil. I saw my GP yesterday and asked him to change my prescription to Planquenil. He said it shouldn't make any difference, but agreed to my request. Started taking it straightaway, and so far I've had none of the burning stomach pain that I had previously. I'm taking 200mgs twice a day.
Went shopping yesterday and because it was so cold I was wearing my fur hat. (not real fur) Felt quite normal! The bad weather does have some benefits!

Sandy, I just checked this link out - fantastic some research is being done - I completed a survey here in the UK just a few weeks ago for Dr Harries in Salford.

I have emailled this survey in the States and told them about our group, I also said we have ladies in UK, Germany, Iceland and Portugal so is it possible for any of us to join in this study, with any luck we can get an opportunity for more of us to contribute data.

Thanks Sandy.

Hello Ladies,

Still trying to come to terms with life lived with FFA. In particular, trying to decide if I want to embark on the treatment path...just can't readily stomach the idea that taking high powered systemic drugs is a good thing. I am planning to see an alopecia specialist soon and hope that will clarify things for me.

Speaking of this specialist I will be seeing, those in the US, west coast, may be interested in participating in the following study by this US physician with national prominence as an expert in studying/treating alopecia. She's published various medical studies and a book on managing this disease. You can look her credentials up on the internet.

Cicatricial Alopecia Research Study

Dr. Paradi Mirmirani is now enrolling patients with cicatricial (scarring) alopecia in a research protocol that is being conducted in collaboration with the Department of Dermatology at Case Western Reserve University. Patients over the age of 18 with active cicatricial alopecia(any variant, treated or untreated) are eligible for enrollment. Participation includes filling out a hair loss questionnaire, scalp photographs, and two scalp biopsies. Scalp biopsies will be evaluated for changes in enzymes of the sebaceous glands (peroxisomes) which may lead to lipid accumulation and then destruction of the hair follicle. There is no compensation for participation in the study.

For patients requesting further information or patients interested in participating in the study please contact Paradi Mirmirani at: Phone: (707) 651-2552 e-mail: Paradi.Mirmirani@kp.org

Link to study info: http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

It is at least heartening to know that there are several research studies happening on FFA. With this group having members in several countries we are well placed to learn of any new developments too.

Thank you for posting the link to the FFA study in NC. I asked my derm for a referral there on Friday, before I knew about the study, and just filled out the participation form online. Will keep you all posted on results.

Brighton Uk :o) xx

You can go under the settings of your profile and add on your location after your name, then save your changes. Then you don't need to type it in each time.

Hi everyone, you have all been so busy its hard to keep up with all the conversations!
Sandy i have registered to the survey, I don't know if they will take me as I'm in the uk, but I'm sure my doctors will confirm the diagnosis!
Debs could I complete one of Dr Harries surveys as I'm not registered with him although I have had contact with him?
Its good to know there is some interest in this disease!

Rebecca, that was very interesting about your specialist in Berlin saying he reckoned he got a 50% success rate with plaquenil. My dermatologist didn't give me any indication of success rate, she just said it would help the inflamation so it's good to get some idea of the possibility of success, even if it is only one doctor's opinion.
It's worrying that your local dermatologist may have given you the steroid shots in what was apparently the wrong place because as a patient you have to trust that your doctor is doing the right thing for you.
I hope your next lot of steroid injections work for you.

Heidi, as you have been diagnosed with FFA by a doctor in the UK I would suggest you ring Dr Harries receptionist to get a message to him and ask if you can do the study, if you give her your details she can action this and pop a survey in the post to you if he agrees 0161 206 1012.

Rebecca, so sorry you have been through all those shots for no reason, very good news though that the plaqeunil has a 50% success rate and also that your derm in Berlin says that steroids (in the right place) can help. I think you should take photos of your scalp where this doctor injected in error and see if you can get some compensation from the health authority. Good luck with your treatment from now on.

Rebecca I've just read your post. Very sorry to learn of your bad experience with the steroid injections. As your specialist said, once hair follicles have been scarred there is no possibility of hair regrowth from these areas. All that can be done is to try to reduce any inflammation in the remaining hair follicles. I am taking Planquenil and while I know that it may not work, I am encouraged by the knowledge that there is a 50% sucess rate. Rebecca I do hope your skin recovers in time and all the best for your further treatment.

Hi everybody -
Chrisy - My doctor told me to stop using the desonide on my eyebrows because I have been using it for about 7 months, he didn't want to put me at risk for cataracts. I believe it has minimally worked for me (eyerows) as well as the shots - but at the moment, my dermatologist
has stopped the shots as well. My skin has thinned and has become rather dented, At the moment, I am taking 100 mg of doxycyc 2x/day and the 200 mg plaquenel 2x/day. I also put 5% minoxidil 2x/day on eyebrows and behind hairline and hydrocortisone butyrate topical solution behind the hairline 2x/day. Mentally, I feel better about stopping the shots and the desonide - at least for the time being. I think that this regimen has kept the hairloss at bay and some hair on the temple region came back as well as a little eyebrow hair. I see a dermotologist in the clinic in one month and the very specialized hair dermatologist in 4 months.

Regarding my eyebrows, I am taking Celia's advice and looking into tattoos. I thank everyone for their input.

I emailed Wake Forest and put my name on the list. I heard back from them - it hasn't started but they asked me for my info.

STEROID INJECTIONS - has anyone that has used the steriod injections on the scalp had indentations that have now filled out and healed. Lots of ladies are reporting dents and marks on their skin after these shots - but do these dents go away after a few months??? I asked Dr Harries and he said it can take several months for the dents to heal but I would like confirmation from ladies that have used them. And OMG we now have 50 ladies in this group - we can reassure ourselves we are accessing info from all over the world in this condition.

Hi Debs. Can anyone put a picture of thier indentations online? Only I have an indentation caused by the condidtion itself. I'd just like to compare the 2 :o)
x

I think to be honest I was very down all of 2012 because of this diagnosis, it has taken me a full year to feel in anyway like my normal self again. I have been using this group and the Alopeica UK forum to hold things together and now I am seeing Dr Harries I feel much more relaxed, I can now feel that I am doing everything possible and I can't expect any more of myself. I am trying to be kind to myself. I am giving myself more time, I have resigned from some of the voluntry work I usually do, I am not studying for any qualifications and I am just doing my salaried job (which is part time) and having plenty of lunches/theatre trips etc.. to perk myself up. It is tough having this condition and I think in some ways I have to take it one week at a time but I do feel a great deal better than in 2012.

It's great that you are feeling better Debs. It does take time to come to terms with having this condition. I've become hair obsessed since having FFA which is weird because I wasn't when I had more hair! Yesterday I had exam practice which was infront of a camera. Not only was it in front of a camera but I also was able to watch myself. All I could focus on was my shiny balding head. Anyway, next week I shall wear a headscarf.
Good news today that I managed to get a prescription for Minoxidil from my GP. Dr Harries didn't think I could get it prescribed but I did and also managed to get the 5% strength. Fingers crossed it helps.
Hi Jodie :o) The conference in Edinburgh sounds interesting. Can we go to it?
xx

Hi everyone, I wanted to comment on the steroid injections. When I first went to a dermatologist in Jan 2011 it was because of having a very dry, itchy scalp and I thought it was dermatitis or scalp psoriasis. I first tried Dermasmoothe oil treatment - very messy, and then clobetasol topical liquid and clobetasol shampoo. This helped my scalp. Then I noticed a strip of hair along the back of my neck had fallen out - my forehead and temples were okay at this time. My doctor started giving me the steroid injections to the front of my scalp along the hairline and temples. I had these every 6 weeks for a few months. My hair must have been thinning then but I didn't really notice. After the 5th round of shots I didn't see any improvement and realized my insurance wasn't covering the shots so I stopped getting them, and my itchy scalp was improved so I didn't go to the dr for a while. That fall I noticed my hair at the temples pulling out with hardly any effort and seeing round patches of hair loss on my forehead. I was going through a lot of stress at the time. I was worried about the cost of treatments, but eventually went back to the derm in Feb 2012 with lots of hair loss in my front and temples, got a biopsy and diagnosed with FFA in March 2012. Derm said there was nothing to help since the follicles were dead, and didn't recommend any further treatment. He said there were some RX drugs but didn't recommend them because of side effects. He'd only seen a few women with this problem. So I my opinion the shots I got didn't help as I got them prior to the hair loss and didn't stop it. They were painful, but not terrible and I don't notice any dents, but it has been over a year and a half since then. So now a year later, I've had no treatment other than using T-Gel shampoo to help my scalp, and my hairline has receded quite a bit but seems to be staying the same for now. I do keep thinking about going to a different Derm for a 2nd opinion to see if there's anything I can do to keep the hair I still have. - whether Rx or Rogaine. Sorry this is so long! Karen - Iowa

I hope my derm is going to the conference. I'll ask him at my next appointment. I suspect there may be many more women with this condition who remain undiagnosed. We are all pro-active on this forum and have sought help from our doctors and either been referred by them or asked to be referred to a specialist. In my case part-way through last year I realised something was not right with my hair. (At this point I had never heard of LPP or FFA. I thought I had Androgenic Alopecia). I researched on line for a local consultant dermatologist who specialised in hair loss and then I went to my GP and asked her to refer me to him.
Liz I'm interested that Dr Harries has prescribed you Minoxidil. I asked my derm about using this on the crown of my head where the hair is thinning. He said that the hair on the top of my head was being lost due to LPP and therefore Minoxidil would have no effect. Some derms are prescribing Minoxidil as an additional treatment and some are not. It is very confusing!

Hi Caro. Dr Harries told me that the thinning hair on the top of my head is due to female pattern baldness and that although the FFA and thinning are sometimes seen together they are seperate issues. It'll be interesting to see if it has any effect. I'll probably just absorb it in to my scalp and grow a fine moustache and a couple of sideburns!
xx

Hi everyone. I'm near Edinburgh and my dermatologist is based in Edinburgh Royal Infirmary (Dermatology Dept.) I'll ask her about the conference when I next see her (beginning of May) - maybe she'll go to it. When I last saw her she did say that derms were seeing 'quite a few people with this problem' though when I first saw a derm (about five years ago) he said it was a 'very rare condition'. I wonder if a lot more people are getting FFA or if it has just not been reported in the past (especially by older ladies who might have thought, as I did at first, that it was just part of the menopause or ageing generally.)
I have never been offered steroid shots, by the way. The only drug I was offered in the past was ciclosporin - which I refused because of possible side-effects. I've had FFA for about eight years but wasn't diagnosed until five years ago (diagnosed as Lichen Planus at the time). Nobody seemed to know much about it then and most of what I learned came from researching it myself on the internet. The latest derm I've seen has suggested hydroxychloroquine. I've lost a lot of hair from my forehead and am at the stage of investigating wigs. In my health board area we can have up to 4 modal/acrylic wigs free a year but I will look at natural hair wigs too as I think they look so much better. I won't get one of them unless I pay for it myself, however.
Good luck to all you ladies out there with your treatments.
I think this support group is great. It's reassuring to feel that you're not the only one in the world with this problem!

Jodie, I think quite a few derms have incorrect ideas frankly about FFA not affecting women from black/Asian heritage, I know of 2 other black women apart from myself with FFA and I think Asian women would be just as likely to be affected by FFA. If a derm hasn't seen someone from a minority group with FFA they seem to think we don't exist, this is a worry because it is not at all scientific in their approach to FFA. I have seen quite a lot of Asian women with other types of alopecia over the years and I have a feeling that for various cultural reasons they might not be inclined to seek medical assistance. I don't smoke and have never smoked. I have also mentioned before on this site that I have seen quite a few women in supermarkets and out and about with what looks like FFA, I am convinced it is quite a common type of hair loss these days and just very much under-reported as well as undiagnosed, my GP didn't know about FFA, I was diagnosed when I went to a private hair loss clinic in London for a second opinion. This meeting in Edinburgh is great news. I would also like to attend if it is something that is open to the public. Lets hope that if these derms are comparing notes we will get a more effective protocol for treatment.

"Christine from Ottawa Canada,
HI Ladies, I've been absent for the last while - in part too busy with work and in part.. taking an FFA break. I'm not on any systemic meds at the moment and am not super at applying stuff at night either... my scalp is itchy and sensitive ( I also have LPP).
I wanted to comment on how/if we should approach people we see with hair loss... question.. if someone had approached you before you were diagnosed and gently suggested you get your scalp checked out.. even if you had been offended for a moment or two.. wouldn't it have made you think.. wouldn't it have made you go and see a doctor? Ultimately, even if you might have had mixed feelings about a 'stranger' approaching you, wouldn't you have , (especially if the diagnosis was FFA and you could save some hair) inwardly thanked that person for their consideration. I challenge us all to get past our own awkwardness and fear, and reach out to those who are dealing with hair loss, and encourage them to go see a doctor and get a biopsy.
Its quite likely that like many skin diseases, ours is one that has an element of shame or embarrassment to it and so we are nervous to speak out about it.
I think we all know deep down that shame has no place here and that we are all merely people living with a particular disease, just like those who live with diabetes or high blood pressure - just ours is visible.
we improve things for ourselves and those yet to be diagnosed if we come out of the closet, we speak up and we reach out.
after all we are worth it!