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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 Kathy on June 6, 2014 at 1:54pm

 I've lost probably 50-60% of both brows but I've just started using Rogaine on them - not much yet but it's only been about 2 weeks.  I'm hopeful that even if all I get is that fine, colorless hair I can see someone who can color it and then shape my "new" brows.

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

Comment by Celia on June 6, 2014 at 7:16am

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

Comment by Debs on June 5, 2014 at 4:01am

Whoops sorry its 13 September

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