Having some treatment success-there is hope!

I have FFA/LPP specifically.  I lost eyebrows 10-12 yrs ago in my early 30's- very slow progressing.  I lost my eyebrows in my early 30's over 2-3 yrs (10+ years ago).  My hair line started thinning and receding about 5-6 years ago  Very slowly.  I pursued scalp biopsy and treatment almost 1 1/2 years ago.

You MUST get biopsy of scalp to determine your condition and you have to demand it.  It presents in so many ways and symptoms vary a lot.  I have never had much pain- just some occasional tenderness.  I can see scarring where my lost hair used to be- but my bangs cover it or I wear a Lululemon head band when I want it back for exercise to cover the scarred area.  

I initially was prescribed doxcycline, then my doctor ran all the tests to start plaquinel treatment.  I'd say I've been on twice daily plaquinel  for a year- still obvious loss continuing.  Last November my doctor added scalp injections (steroids) every 6 weeks and 3 weeks ago she added Erythromycin to the mix.  Also twice daily.  I have had considerable slow down in hair loss.  I am very hopeful!  My doctor says that if this burns out- it may not be out of the question to look at future transplants to fill in for the loss.  I've had no adverse affect with plaquinel.  Side affects are VERY rare and your doctor should monitor blood levels closely for the first 6 months of treatment.

Incidentally, August 2013 I had brow transplant that has been very successful.  Though, I've been warned the disease could become active again and take them out.  At least I've added some serious quality of life for the time being.  

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Replies to This Discussion

Permalink Reply by jess on February 21, 2015 at 12:06pm
Katy this is great news!! I am so happy things are working for you! I plan on getting the stem cell transplant late this year on my hairline! What is arythimyacin?
Permalink Reply by Terri on February 23, 2015 at 7:08pm

Jess, I would love to try stem cell transplant!  Is this a trial study or have doctors found that stem cell transplant works on FFA?

Permalink Reply by jess on February 24, 2015 at 12:26pm
I first learned of this procedure on the regular comment page of the FFA discussion on this website. Sas Holland is one of the girls on here and she said they told her that it has worked for 80% of FFA patients!
Permalink Reply by sallylwess on February 21, 2015 at 7:02pm

I am happy you are having success.  I also wonder what the arythimyacin is, and how it is prescribed.  It it a pill, a topical, or what?  Where did you have your brow transplant?

Permalink Reply by Katy M. on February 22, 2015 at 3:06pm

What a bad speller I am!  Erythromycin.  It's an antibiotic.  

Where do you live that you can get stem cell transplant?  Who are you working with on that?  I would LOVE to know how that goes.  

Dr. Jeffry Epstein did my eyebrows in NYC August 2013.

Permalink Reply by jess on February 24, 2015 at 12:24pm
I am going to the hair science institute in London to have the transplant done. I live in Kentucky and have never left the country so I am nervous but excited! Could you post some pics of your eyebrows, I would love to see how they turned out
Permalink Reply by Katy M. on February 25, 2015 at 8:08am

Permalink Reply by Katy M. on February 25, 2015 at 8:09am

this is with no makeup,  freshly trimmed.  I have to trim them about every days.  Best grooming problem I ever had!

Permalink Reply by Katy M. on February 25, 2015 at 8:10am

Permalink Reply by Katy M. on February 25, 2015 at 8:12am

filled in with some pencil.

I had ZERO brows left and fading tattooing only (very faded tattoo).  Zero. Nada.  Zilch.  It took a full year for the brows to regrow after the transplant.   

Permalink Reply by juliec on February 25, 2015 at 2:04pm

Wow! That looks amazing.  I have faded tattooing as well and am looking into what else I can do.  I have next to no eyebrows left.

Permalink Reply by jess on February 26, 2015 at 4:06pm
Katy they do look amazing! Thank you for sharing! I hope I can have successful pics to share in the future;)

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