Replies to This Discussion

Permalink Reply by TrayG on January 13, 2015 at 1:47pm

I haven't heard of this treatment at all, but if it's true, I'd love to know more as well.  I too have FFA and feel like I'm losing too much too quick at my hairline as well and the thought of not having any re-growth to this point is very depressing. Thank you Brooke for putting this out there....wishing you all well.  

Permalink Reply by Brooke on January 13, 2015 at 2:14pm

Hi Sally and Tray:  I got the address of Dr. Tosti and will write to her. If I don't hear back I may call and see if I can get any info.  My dermatologist, who is a specialist in hair disorders, is aware of the article but hasn't found any info on the treatment specifics.   

Permalink Reply by TrayG on January 13, 2015 at 2:18pm

Thanks Brooke, sure appreciate any feedback you might be able to provide for us.  Have a great day!

Permalink Reply by sallylwess on January 13, 2015 at 2:03pm

No, I have not heard of anything from this laser treatment.  I hope someone will give us an update.  Thanks for the info on plaquinil.  I have never used it.  Good to know that depression is a side affect.  I appreciate your words of support.  Courage for the battle is something we all need.

Permalink Reply by Plain Jane on January 13, 2015 at 2:41pm

My dermatologist here in Florida has recommended this treatment for me. It's the X Trac Laser, narrow band UVB. I'm waiting for my insurance company to approve it. Hopefully,next week  I will have the first of what will be several treatments. 

Here is a link where you can read more about it from JAMA

http://archderm.jamanetwork.com/article.aspx?articleid=1105344

I have FFA in the form of lichen planopilaris - diagnosed by biopsy in 2012. What started out as "frontal" now encompasses the entire hairline,above my ears on the sides and across the back. Since diagnosis, I have tried everything: injections, pro-topic, clobetasol, plaquenil (for 2 years) finasteride, doxycycline, turmeric, anti-inflammatory diets, and all the rest. The disease still rages on and I still have a sore, painful scalp and very little remaining hair. Laser treatment is my last, best hope. Fingers crossed!

 

 

Permalink Reply by Brooke on January 13, 2015 at 3:23pm

WOW!  That's great news; let us know if it works..Thanks a bunch!

Permalink Reply by sallylwess on January 13, 2015 at 3:29pm

Yes, please keep us in the loop.  I am very interested as I can relate to all you say here.  I have not used plaquenil. Will they try the laser treatment when the disease is still active?

Permalink Reply by Plain Jane on January 13, 2015 at 5:33pm

Yes, and hopefully, it will arrest the inflammation and thus alleviate the symptoms... redness, soreness, itching, etc. ... I don't think they can suggest it as a "cure" however, and while there may be initial success, it can always come back. My derm here has a few FFA patients who have lost all of their hair and the disease is still active : (( 

Plaquenil has not worked for me, but it is considered a first line therapy for FFA....

Permalink Reply by sallylwess on January 13, 2015 at 8:04pm

Thank you so much for this.  I have not heard of one losing all their hair.  That is very bad news!

Permalink Reply by TrayG on January 13, 2015 at 3:36pm

That is great news!  I have printed the link and will take it with me to my dr. appointment later this week.  Best of luck and YES, please keep us posted!

Permalink Reply by TrayG on January 16, 2015 at 1:23pm

Well I showed my derm. the article today on FFA laser treatments.  He said he's heard of it, and referred me to get a second opinion at a Dr. Shapiro who practices at NYU and specializes in hair loss treatment.   Being that my FFA is still active and I'm getting desperate, I decided to call Dr. Shapiro in NY.   I found out he takes no insurance and his first appt. fee is $875.00 and that doesn't include any procedures that may need to be done.  Every follow-up appointment after that is $410.00.  I'm so discouraged I can't even tell you....I can't afford this.  Today's appt. for me with a dr. in my plan was $200.00 - how do the expect people to be able to afford this kind of healthcare?  I sit here with a pit in my stomach....

Permalink Reply by Brooke on January 17, 2015 at 4:35pm

Those fees are absurd!  I'll let you know what I find out--maybe there is another dermatologist that will do the procedure at a more reasonable rate.  I'm getting desperate too; I was diagnosed a couple of years ago and it's getting almost impossible to cover my ever-bigger forehead.

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