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Comment by Classical Anne in NC mountains on June 8, 2014 at 5:55pm

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?

Comment by MJ on June 7, 2014 at 2:47pm

Anne Loiuse, it is as if you were writing on my behalf. I feel so much the same, although I have been holdingnanbit firmer with the gluten free, dairy free, with cheats here and there. I try not to obsess over hairlines and eyebrows, but I just cannot help myself! One other thing I don't know if I posted about previously is that Inhave stopped coloring my hair. My derm made a comment that peroxide, which is in both color and highlights may aggravate things. I meant to follow up on that, and in the moment forgot. Vut that is kind of an adjustment foe me as I have young girls and I like to look young for them! MJ

Comment by Anne Louise on June 7, 2014 at 10:26am

Classical Anne, thank you for your thoughtful post. I always appreciate your insights as well as those of the other ladies on this site. However, I'm developing a love/hate relationship with this site! Now that I have my new eyebrows and a med regimen in place for the next few months, I'm trying to put the FFA on the back burner for a while and get on with enjoying my life with my three sweet little ones who are growing way too quickly. But I keep getting drawn back into these discussions, saddened to see new members joining but heartened to see the warm welcome they receive (and a bit guilty for not welcoming them myself!)

I guess I'm entering a new stage in living with FFA. The shock has worn off and I've adjusted my routines to accommodate popping pills throughout the day and the topical applications as well. And my other newly developed habit is studying people's eyebrows and hairlines, from news anchors on TV to random people in the grocery store. It's similar to how I always scanned the left hand of a cute guy to see if he was married during my many years spent as a single gal!

Last Sunday I went to my first CARF support group meeting. This was the one rescheduled from the botched catastrophe back in April. It lasted for 2 hours and there were about 20 people there. All were women, some brought their husbands for support. I was surprised to learn FFA was in the minority. Most had LPP, about three others had FFA and a couple with very rare cicatricial alopecia. I am quite certain I was the youngest woman there.

The majority of the meeting was spent reviewing the CARF conference that took place in Chicago in April. I was hoping to learn of some breakthrough discoveries, but there wasn't much I heard that I already didn't know about. Dr. Goldberg did say that there hasn't been anything to show that any particular diet, such as gluten free or sugar free, has been shown to help with this disease. Mostly a rainbow of food (i.e. lots of fruits and veggies) is good for overall health. I did try gluten free for two months, but I found having FFA was hard enough and restricting some of life's pleasures was too difficult. I do eat a variety of fruits and veggies and an overall balanced diet, so until some definitive study is done on diet and hair loss, I will stick with that.

A lot of the women in the group were wearing wigs, and there was some discussion on all that wig wearing entails. From what I could tell, none go swimming with their wigs. The thought of giving up my favorite form of exercise is more than I can handle right now. It was hard enough not swimming for nearly a month while I was having my eyebrows done! I did share about how having my eyebrows done was a huge help, and in some ways I was the hit of the meeting! When it was over, many women came over to get a closer look at the artistry. So as a newly diagnosed member, I ended up giving more support that I received! Overall I'm glad I went and will continue to go to these meetings, which are only three time a year, but I am so very very grateful to have this forum available to me to air my feelings and identify with the rest of you and what you each are going through.

So if I seem silent, know that it is because I'm trying to get back to living life as normal as possible. I suspect many others in this group do the same. I notice that many read the posts but not many write. But that is the beauty of this site, it is here when we need it and we lean on each other in the ways that work best for each of us. Thanks to each of you for reading my long rambling post and thank you for being there!

Comment by Mareea on June 7, 2014 at 3:40am

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

Comment by Classical Anne in NC mountains on June 6, 2014 at 4:53pm

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.

  . 

Comment by Jules UK on June 6, 2014 at 2:38pm

Thank you to all the ladies who responded to my survey appeal! In the light of their (and a few others) comments, the steering group made some amendments to the content and layout of the questionnaire. And, Norfolk Girl, East England has been added to the location list! The web-based survey will be ready in early September, so watch this space!
MJ mentioned the CARF newsletter, there's something towards the end about custom made hairpieces that look like mine, made by a company in the US. Might be worth a look for those ladies on another continent (albeit a big one) searching for just that.
I took my hairpieces off last night for the first time. The skin beneath looked normal, not wrinkly. (Unlike the rest of me:)) and putting them back on was very straightforward. In fact, at my art class today, we were sketching outdoors. I hadn't expected this, so, without hood or sunglasses etc to hold hair down, I would have been very uncomfortable. I love my hairpieces! Have a good weekend everyone..

Comment by DebbieT on June 6, 2014 at 11:26am

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.

Comment by MJ on June 6, 2014 at 11:15am

Jodi, oh my! MJ

Comment by Jodi on June 6, 2014 at 10:49am

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.

Comment by MJ on June 6, 2014 at 8:23am

Hi all, the CARF website now has the recap of the spring conference that was held in Chicago. Something really interesting - they have found that 9 out of 10 patients were able to regrow eyebrows with intralesional triamcinolone injections for FFA. Has anybody heard of this? So far my eybrows are holdong their own woth rogaine, but it seemed like really good news to me! MJ

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