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Comment by Mel on June 12, 2015 at 10:12pm

Terry, Thank you for the very nice note. I really appreciate your kindness and the info. I have been trying to read a lot, which got me thinking no treatment was best. The dermatologist said she would recommend against that and because some women (supposedly?) have some success with Plaquenil she recommends taking that. She said the side effects are very rare. But... I'm kind of really cautious, especially when it's my vision we're talking about. So I'll have to mull it over.
I just came home and turned on the TV and a man was seling capsules that have like 2,000 times the recommended biotin. I'm taking 3 mg per day, sometimes 6 mg. But maybe I need more. I Googled some info and found an interesting post. I know some ladies on here mentioned tingly feet. Here's what it says about biotin deficiency: You may wish to take more biotin than the recommended dosages if you experience symptoms related to a biotin deficiency. Biotin deficiency symptoms include hair loss and developing a red rash around your eyes, nose, mouth and/or genitals. This rash is characteristic of a biotin deficiency, along with an usual distribution of fat in the face. You also may experience unexplained fatigue, hallucinations and numbness in your arms and legs.
Here's the link: http://www.livestrong.com/article/503681-can-a-person-take-too-much...

Comment by Mel on June 12, 2015 at 6:44pm

Hi terry. Wow. Not good. So scary. They say it is rare, but permanent, right? Is your vision issue permanent? She recommended against doing nothing, but losing sight sounds worse than losing hair. :(

Comment by Mel on June 12, 2015 at 6:21pm

Hi all. I did not get the biopsy, but they have diagnosed FFA. Went for my second visit today at the derm and was going to say no more shots, treatment, but she recommended plaquenil. But I don't like the sounds of this retinal toxicity. Has anyone experienced vision problems after taking it? She also prescribed me the foam, chlobetosal.

Comment by Sad in chicago on June 12, 2015 at 4:44pm

All you need to do is google it....there is a ton of stuff on the internet.  Also, once you go down this road, you find a myriad of ads for hair restoration, wigs, etc.  

Comment by LoriO on June 12, 2015 at 2:20pm

Is the factsheet that is mentioned as being provided by Debs available anywhere online?  I am searching for any information because I have recently been diagnosed with FFA. Thanks!

Comment by LDW on June 11, 2015 at 3:55pm

Hello!  I just received my biopsy results…I have Lichen Planopilaris.  I have received no information from the doctor.  The nurse left me a voice message giving me the results and minocycline prescription was called in.  Help!  Does anyone know of a Specialists in Albuquerque,NM?  I am considering going to Mayo.  Has anyone had any experience with them?  Thanks!!

Comment by MJ on June 5, 2015 at 5:37pm

I don't know if I mentioned this or not at some point in the past, but there is a link between omeprazole and lichen planus. I had been taking it daily for acid reflux the year prior to getting FFA.

Comment by Jean on June 5, 2015 at 5:09pm

I've also recently been diagnosed with under active thyroid and estimate that I've probably had FFA for about 6 years.  I have no eyebrows (but beautifully tattooed on) and no bodily hair apart from eyelashes, which come and go.  Like many FFA sufferers, I have other autoimmune issues, including psoriasis and arthritis. There seems to be so much commonality between us that it may be interesting to produce a 'profile' to assist with research - although I'm sure that's been done before!

Comment by Anne Louise on June 5, 2015 at 4:47pm

Linda that is interesting. I've always wondered if the thyroid was somehow connected, since eyebrow loss, especially of the outer third of the eyebrow, is a feature of hypothyroidism. I had thyroid cancer in '09 and diagnosed with FFA last year. My eyebrows were falling out for over a year, but I assumed it was due to my thyroid levels. The whole eyebrow feature is bizarre to me, especially where they seem to respond to treatment more successfully than the scalp. My once thick dark eyebrows, sadly are completely gone...for me the hardest part of this disease so far.

Comment by ammie on June 5, 2015 at 3:49pm

I just wanted to update you all on my biopsy results. The biopsy showed lichen planopilaris with moderate inflammation. My dermatologist is referring me to a scarring hair loss specialist and gave me a prescription for Topicort and Plaquenil. Sigh. 

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