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Comment by zee on November 16, 2010 at 10:04pm

to Asher, I was diagnosed with lichen planopilaris about a year ago. The derm put me on a 6 month course of doxycline as well as topical solutions (dermasmooth) but I still have some tingling /itching even though the hair loss is not as rapid. Lately I have just started using some clobetasol propionate cream that was prescribed some time back for a skin condition and its helping but still got a little bit of tingling.. its frustrating! :-/

Comment by Angie P on November 16, 2010 at 3:30pm

How long have you been taking this regimen and how long do you anticipate having to be on it? Getting a proper balance of these things must be tricky. I expect the Griseofulvin may be there to help counteract some of the issues routinely caused by anti-biotics???? How often do you get bloodwork?

Comment by Asher Jones on November 15, 2010 at 10:56am

Hi everyone! I just wanted to share some information on what has helped me. I was diagnosed through a biospy that I havew CCCA (Central Centrifugal Cicatricial Alopecia) last October 2009. After finally finding a derm that knew anything about this I was put on Doxycycline and Griseofulvin. It worked wonderfully! I am still on those two medications and have not had any more hair loss since then.

Comment by Angie P on November 14, 2010 at 8:31pm

Thanks Megan.

Comment by Megan Hopkins on November 14, 2010 at 1:33pm

hi angie...i think your right....i have done a good amount of research on scarring alopecia since i have it...and i never read anything about your eyelashes falling out. Maybe could it be something to do with stress? ...a hug for you..love, megan

Comment by Angie P on November 1, 2010 at 5:15pm

Okay, have I been operating under a misconception?

I was diagnosed with scarring alopecia brought on by lichen planopilaris. But it seems that now my eyelashes are coming out as well. I thought eyelashes only came out with other types such as totalis or universalis.

Comment by Angela Y Styles on August 1, 2010 at 7:56pm

hi, i am new at this website. I am glad i found it. I feel like i am not alone. I know that has been said a million times, but i feel better already. Not sure if i'm posting in the right spot.

Comment by MiNAH on November 13, 2009 at 4:59pm

I have been shaving since I received my prosthetic freedom wig.
www.freedomwigs.com
www.freedomwigs.com.au
Yet anything on my head causes the pain and irritation.
I do not wear wigs"
"NO WAY"
Also using my astranged husbands, dirty clippers to shave, caused me an infection.
So...eventually the hair started creating bald spots where there was some hair.
So the clycle begins all over again...bald and sore!
Nothing is healing it, other than 91% Isopropyl Alcohol.
It's drying it up a bit!
I cannot use any cortisone alcohol lotion, as they put "glycerine" in it, and that makes my head itch so bad.
Non of the Cortisone Creams, or antibiotic creams I have are working either.
So...time and Isopropyl Alcohol 91%
Thanks Crown Regal for opening a new page into our troubles.
Mina

Comment by Sandra Dubose-Gibson on November 5, 2009 at 4:02pm

Hi All. I'm new to this group so let me share with you my story. I have lived with Alopecia for the past ten years. The last six of them have been with Alopecia Universalis. When I was at the NAAF conference this summer, it was the first time was ever around other people that were bald. I quickly realized that my head looked different. Everyone else seemed to have a beautiful smooth complexion but my skin was blotchy. I go gout bald occasionally but I don't feel comfortable going out bald unless I put makeup all over my head to make my skin look even tone. Other than the color, my head looks pretty nice. lol. While there, I expressed my concern to my new friend Julia. She educated me on the different types of cicatricial alopecia and suggested that I might have it. I was familiar with the wonderful work that Crowned Regal has done in spreading awareness of this disorder but I did not thing that it applied to me. Long story short, when I got home I did some more research and found the CARF website and the lovely Sheila Belkin. I recently had a biopsy with Dr. Amy Mc Michael and here I am today in the Cictricial Alopecia group. I have been diagnosed with centrifugal alopecia and lichen plani?...... (who can really say all of those big words anyway?!) Anywho, I had already accepted having to live as a bald woman and I have truly moved past that pain. It can be annoying some days but at least my heart does not hurt anymore. I have to admit that I felt a bit sad when I got this new diagnosis. Does that mean that I truly have to give up all hope of EVER having hair again? You mean this is my situation forever and ever amen?! I guess I harbored a small glimpse of hope that one day in my life I could experience regrowth again. It happens to many people that have Universalis. I wanted to be one of them, even if it was many years later. Well, I have to admit that I think that sucks. I'm okay and I am handling that disappointment as I have others BUT let me just say for the record, THAT REALLY SUCKS!!!!!!!!!!!! :) Thanks for letting me vent. Now I can move on.

Comment by Lynn on October 25, 2009 at 3:31pm

All, just wanted to let you all know that there is a cicatricial alopecia support group meeting in Boston on November 2nd. I'm going to go. I'd love to meet others there that are going through the same thing. Let me know if you would like more information and I'll email the info.

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