Jules - I'm afraid I cannot send this on as it requires me to use WORD which we currently don't have on my laptop !! Sorry !

Just diagnosed with ffa. I keep thinking I will wake up and it is a dream. I am in NJ and looking for a good doctor. I am seeing someone in NYC but hoping to find someone closer and who may take insurance. I have an appointment to get a hair piece or wig. Just looking for friends and advice. Thanks. Irene

Hi Irene,

I have lost about 1.5 inches at the sides, more around the ears and about .5 inches at the forehead. I have been pulling my curly hair forward while wet and keeping in place with bobby pins until dry. It stays that way. People say that I look different but cannot really figure out what has changed.  I am not sure how long I can continue to hide it though since the hairline keeps advancing.  I was thinking of getting the sides covered with strips of hair like maybe sideburns pieces. I am not so sure how it will look though.

Jen - you may have read that several ladies have had hairpieces fitted that remain in place for a short period of time, throughout all activities.  Certainly Jules and Pam have had this done in the UK - not sure where you are but it's worth researching.  Good luck ! x

Hi Jules,

I would be very happy to help if you still need bodies.

All the best

Claire

Something led me to investigate the Women's Hair Loss Project website.  It seems to be geared more toward AA and forms of alopecia that strike younger women.  But I want to encourage everyone to watch the video on the upper left of the home page, within the blog "Grace & Beauty Defined".  It's a beautiful, emotional, and inspiring video.  http://www.womenshairlossproject.com/

Hi C,

Jules and Pam are in England and I live in Canada. I am looking to find someone who can do what they described but so far everyone is trying to make me buy a wig which is not necessary at this point. I still have quite a lot of good hair.

Jen 

Yes I called a place who advertises heavily on the radio for wigs called Gabi's and when I described my problem and that I just need a hairpiece that would cover that area, they merely pointed out that they have lots of wigs. Perhaps the person who answered was unaware if they have such.

Hi Kijijji,

I saw a place in St Catherine's on Kijijji. They custom make partials according to their advertisements. When I called, they were trying to sell the whole wig.

Last comment was to be

Hi Rita

not Hi Kijijji. My fingers are faster than my brain. lol.

Claire, thank you so much for offering to  complete a survey!  If you send me a friend request, I can give you my email address.  I need replies by tomorrow evening though, so if that's a bit of a push, you will still be able to take part in the real survey when it goes live.  Not sure how soon that will be.

sorry to be slow replying - I was out last evening at a live screening of the Matisse exhibition from Tate Modern.  Such a good idea, these live cinema screenings.  But I want to go to the real thing now!

Julie x

Pam, I sent you a message about your hairpieces.  I am very curious about them...

Welcome to Caro !  We already have a Caro - so maybe you would like to be New Caro or a name of your choice - perhaps where you live.  Sorry you have this - we shall hear your story soon I hope. x

MJ,  I read a study about eyebrow regrowth after intralesional triamcinolone injections.  I asked my dermatologist about it.  She sees a LOT of alopecia patients - all different types of alopecia.  She will NOT give eyebrow injections due to a risk of blindness from injections in that area.  She was surprised to hear that there are dermatologists giving those injections.

Hi All.  I just thought I would share with you that I have been using rogaine on my eyebrows and have finally noticed some regrowth.  Its painfully slow, but it is there!  I had lost all but 7 hairs on my left eyebrow and on the right Id lost everything.  I read somewhere on the net that eyebrow hair is able to grow back as it does not experience the scarring.  Iv'e been applying it to my brows for around 2 months now, and I am so pleased to see new "sprouts" appearing! The lose of my brows was very depressing, more depressing than my full head of hair.

In defense of STEROID INJECTIONS

Good news, Ladies!  I just want to emphasize the positive effect they have had on me.   With my complicated medical history and heavy load of maintenance prescriptions, very few options were safe for me in dealing with the scalp biopsy diagnosis of FFA.  And understanding that no one has yet been able to medically stop, let alone reverse the progression, I chose to reject postponing the inevitable with additional medications to the pharmaceutical soup already in my GI and bloodstream.  But the superficial corticosteroid scalp injections have no systemic effect, they are simply localized in the affected scalp.  My only goal has been to slow the ebbing tide of my receding hairline.  Like any ending relationship -- this one, with my hair -- I want to be let down easy, please. 

And it absolutely MUST be working.  I have had the full blown scalp involvement -- red, inflamed follicles and nasty itching -- for well over a year.  But I have never lost more than a few hairs a day [maybe 15-20; with shampooing at most about 75 hairs: I actually counted yesterday morning, an exercise in futility and frustration].  The injections relieve both the visible inflammation and the itching, and I can always tell when I'm due for another round.  Yesterday afternoon I had my 7th session, and my Derm was very pleased, finding almost no visible inflammation at all.  I definitely felt the ramp up in itching a few days before the appt.  But she studied my scalp under her lighted magnifying glass and declared surprisingly little progress in the hairline recession.

In all, my frontal hairline has receded just a little over 1/2 inch [I just measured the pale, smooth area] and is getting sparse for the next 3/4 inch.  The temples have receded closer to one inch, but that was almost the full extent of loss before I even began treatment 10 months ago.  Looking back, I know the disease was active at least 2 years ago.  But my total loss since then is remarkably slow, and I am increasingly grateful.  And it must be said, since I have taken no other treatment, that the injections are working!

The only side effect that others find troubling is a sort of indented furrow on the forehead which can result from a poorly placed injection [they need to be within the affected area, not on the edge of the hairline or on the balding area].  Some may have several "dents", but we are told by many that they disappear after treatment ends.  I have one visible furrow, about 1/8 inch wide and 1 inch long, at a diagonal where my Widow's Peak used to be.  I can easily feel it with my fingers, but I doubt anyone would see it, even if I pulled my hair back -- and why would I ever do that?!   

My invisible eyebrows are another story.  They were at least 75% missing before FFA diagnosis last summer.  They are now 90% gone. Injections there were never discussed, though today's comments by others have me pondering.  I have recently begun using Rogaine just on my eyebrows, but it will be many months before I see much progress there, I fear.  And I enjoy the artistic challenge of creating them with make-up anyway.  But I no longer work and have no morning rush day after day.  If the Rogaine is not successful, I will probably join the ranks of the happy tattooed.

As many have said of their experience with this disease, it's hard to know what's working when you're trying several treatments at once. I may be the only one on this forum that is taking injections and no other treatment.  Not sure why my comments always end up so long, but I suspect you all enjoy a success story.

  . 

Do any of you ladies have any experience with Tyrosine? A trichologist sold me a small tub for $40 but it might have been a waste of money. Another question; does exposure to direct sunlight aggravate the scalp with FFA? Should I use strong sunscreen on the  scar or hope for a bit of colour on the white strip? It is a relief being able to ask an informed group.   Mareea

Quick question.  I have spent the afternoon reorganizing my scarf closet.  It has given my whole wardrobe such a boost.  I know that I am fortunate to still need no other accessory hair.  But I'm trying to be patient and hopeful that my eyebrows can be rescued.  Does anyone use BOTH Rogaine and Elidel [or similar combination] at the same time?

Anne, I use both Elidel and Rogaine, but not on my scalp. I use Elidel on my brows, which are nearly back to where they were pre-FFA. I use 5% Rogaine on my scalp at night snd betamethasone diproprionate in the morning, to help with the itching. I've recently noticed that I have new hair growing right along the hairline, which I did not expect. The Rogaine (I use a generic liquid version) has really helped my hair look thicker but mostly on top. I haven't had much new growth on the sides but am able to cover that up.

Alice,

This Elidel that you speak of is listed as treatment for eczema. Is this the same thing you use on your eyebrows?

Jen

Love hearing about the re-growth some of y'all are seeing.  Fingers and toes crossed!  :-)

Thanks for sharing! 

Alice, thanks for your response.  So you do not add Rogaine to your eyebrows as well?  Just Elidel on the brows?  I'm wondering if it's safe/appropriate to use both on my brows, maybe one in the morning, the other in the evening.  Just got the Elidel samples from my Derm last week and haven't started using them yet.  And forgot to tell her I had finally begun the Rogaine on my brows [which she had suggested for my scalp] so the question of interaction/conflict never came up.  Anyone else have thoughts?

The Elidel cream I use on my brows is the same stuff that is used for eczema.  I got some samples from my derm and they last forever.  I use a small amount once a day, in the evenings. The only side effect I have noticed, and it might be from the FFA rather than the drug, is that the skin under my brows burns if I wash my face in water that is too hot.

An abstract about using Elidel for brows in FFA can be found here -  http://www.docstoc.com/docs/146099490/KATOULIS-EN  In the reported case, the patient was also using oral dutesteride, aka Avodart, which I have refused. I'm trying spearmint instead to lower testosterone levels.

thank you Alice. I am happy that your eyebrows have been restored. This is really helpful information.

Hi Ladies,

I have today seen a great Doctor who listened and wants to send me for a second opinion to someone who specializes in Auto Immune and Dermatology.Does anyone see any Consultant in London who might be worth a visit.

I also think I may well be thinking about a a hair piece soon maybe for my fringe. I know the ladies near Birmingham see a good person how about in the South East- Any suggestions welcome.

Claire.

I wanted to share some hopeful news with all of you!

please read:

http://www.ibtimes.co.uk/tofacitinib-citrate-arthritis-drug-that-cu...

Thank you Jess. Great news. Great hope.

I know I am very excited about it!!!!  :)

Jess - thank you - it's just a matter of time and we must all be hopeful ! How did you come across this news ? x

Hi ladies,

I wanted to ask you about being in the sun with FFA. I have been very cautious ever since I was diagnosed with the condition back in November 2012. Stupidly, I got sunburnt in the summer of that year, and a leading dermatologist even suggested that this could have triggered my FFA. Is this something that has ever been suggested to you?

I am about to go to Morocco and I am a little nervous about being too exposed to the sun. I notice that my scalp gets very itchy when it is hot. I have several large scarred areas around the hairline, and my forehead is somewhat scarred in places too, with areas of pockmarks. Will these areas be extra sensitive? Should I cover up completely or is it ok to be out in the sun a little bit (with lots of sunblock of course)? 

Thank you so much for any advice you can offer!

Catherine xx

Catherine, I am very careful with sun exposure and don't think I've ever had a sunburn on my face in my life.  I don't think it has anything to do with my ffa.  It's interesting that the doctor suggested that a sunburn might have something to do with ffa.  I've often wondered if it has something to do with the ingredients in sunscreen since I've always been diligent about applying on my face right up to my hairline.  Have fun in Morocco.  I'm totally jealous!

Catherine, I have no idea why your Dr suggested sunburn as a trigger. I live in Adelaide Australia where the sun blazes for months. If sunburn was a trigger then there would be a significant statistical variation in the incidence of ffa in this city and that is simply not the case. Enjoy Morocco.

The skin where I have lost my hair is pale and does not tan. I have read that skin which is scarred is more prone to skin cancer so I wear a hat when I go out. Also when the skin on my face tans, the white stripe on my forehead looks more noticeable x

I don't think Catherine's MD was suggesting a link between sunburn and FFA in general.  But if it was a significant burn, it could have been a contributing trigger.  Just as the stress of caring for a dying parent [or whatever has caused significant stress in our lives] may have helped to trigger this autoimmune response.  But the stress was not the cause, just the trigger that stirred up the autoimmune reaction that was lurking in our system.  That's the nature of autoimmune diseases.  And though it may be hard to think of sunburn as stress, I once was so severely burned that I could not stand without passing out, and was diagnosed with 'sun stroke'.  And the burn itself was an over-reaction, apparently, to hormonal changes, as I was with my family, each of us having the same amount of exposure, and no one else was burned.

Anyway, I have more or less hidden from the sun, and been careful with sunscreen ever since.  Now with FFA, I do notice how sensitive the exposed scalp is, and how pink it turns in an instant [how do you put sunscreen in your hair?], but like Liz says, all the newly balding areas will not tan.  The pink goes away and you're left with white.  For me, the solution is a hat or scarf that covers all the thinning areas.  But if you want to actually go swimming, a Buff would be the answer.  The good ones, such as the UV Half Buff, are made with water-wicking fabric that keeps your head cool and gives UltraViolet protection.  Here's the link to an original U.S. supplier http://buffusa.com/sports/collections/uv-half-buff-reg/styles/filte....  I'm sure something similar can be found elsewhere in the world.

Have a grand time in Morocco!  And happy sunny days to the rest of us!

I always wear a hat - SPF 50 according to the label when gardening.  Always factor up daily anyway. Anyone with expensive eyebrow tattoos should protect them with sunscreen or they will fade and the process begins again perhaps sooner than necessary.  Do not believe that exposure to UV could possibly trigger FFA.  If it were that simple we would be on the brink of a breakthrough !  And why would this exposure set off a killing spree on the hair follicles, starting with eyebrows, then forehead, above ears and backwards.  The weather forecast is not so good this weekend.........but it's good to bat ideas around, thank you !

Thank you Anne for that link to the buffs! I love a few of them and just ordered two! They should be great for hiking this summer! I have never noticed the sun affecting my FFA either...other than the more noticeable white band that others have mentioned...and I live in Southern California!

Thank you everyone. Anne you are right, my doctor was not suggesting that the sunburn itself was the trigger, but rather the shock that my body went through (it was a bad sunburn). I remember that my body felt traumatized at the time and for at leasts 24 hours my heart was beating very quickly as a result of the stress (it was such a stupid thing - I went for a walk on what looked like a cloudy day, didn't put any cream on, the sun came out and I got scorched on my arms and legs). Interestingly, there is a strong link between sun exposure and discoid lupus, which has many of the same symptoms as LPP (and there exists a crossover syndrome between the two conditions). Anyway who knows, but you can imagine how much I regret that walk...

Thank you for the link to the buffs. They look like the perfect thing for swimming and hiking, which I do a lot of. After much searching, I found SPF 50 suncream with titanium dioxide (which as well as zinc oxide offers the best protection according to this great website http://www.ewg.org/2014sunscreen/) and without fragrance or parabens, which I will be applying generously to my head and body! My forehead is very scarred, so I want to avoid pink or white patches if possible.

Thank you all! C xxx

Catherine, I appreciate your description of your experience with severe sunburn.  It does sound like your body was rather drastically affected.  But I wouldn't want you to ruin an otherwise good memory of such a nice long walk on what turned out to be a beautiful day.  I'm afraid the truth is, that if the extreme burn didn't trigger the FFA, something else would have eventually.  Until we learn to communicate with the most basic particles of our own interiors, those of us who are susceptible to autoimmune response, will see it manifest in one way or another, sooner or later.  So sorry that it happened to be your 'crowning glory' In this case, but trust you'll continue to enjoy long walks and swimming.  Glad you liked the link to buffs, and thank you for the link to sun protection cream.  Now let's go outside and have fun!