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Comment by Lo on June 13, 2015 at 11:54am

Hi Anne Louise. Would you mind if I asked you if your friend who has lost the 2 inches is still wearing her hair naturally? And was she on the Plaqeunil those whole 2 years? And how has your rate of loss been... You said slow (and slow is good!!), but are you able to wear your own hair? Many thanks. I e been on plaquenil for 4.5 months and have had 2 eye exams and bit were great. So I said I'd give it a year.

Comment by Anne Louise on June 13, 2015 at 11:33am

Mel, I can share my experience with Plaquenil as well.  As a nurse working with the blind for many years, I was obviously very hesitant to try it.  However, being newly diagnosed and desperate, I decided to try it.  I was diagnosed with FFA Feb '14 and took Plaqenil and Doxy starting in March'14.  Had my eyes checked in June and then again in December '14...the recommendation is every 6 month eye exams.  Well at the December checkup, after being on it for 9 months, the eye doctor noticed some slight changes to my retina.  I noticed no vision changes.  I came off it immediately.  Both my derm and eye docs said the damage caught that early would be reversible.

I have now been off Plaquenil for 6 months and have not noicted any changes in my rate of hair loss.  For me, the Plaquenil and Doxy didn't seem to make much differeince. Thankfully my hairline loss has been very slow.  The hair on my legs is pretty much completely gone over the past 6 months.  Finally something to be grateful about with FFA!  I do continue with Clobetasol to my scalp, although I apply it randomly every few nights, not religiously every night like I did last year.

I do have a colleague with FFA who swears by the Plaquenil.  She takes it for Lyme disease as well and says that when she is off it (I think she takes 6 month breaks) her hair sheds much faster.  She has lost over 2 inches of her hairline in about 4 years.

So I guess my point is, Plaquenil may work for you.  If you are faithful to your 6 month eye exams, any damage would get caught early.  I am glad I tried it but will not go near it again.  Good luck in whatever you decide, this is a very frustrating disease.

Comment by Alice on June 13, 2015 at 9:16am

Terry, you might want to recheck the biotin dosages. The supplement I take is 5,000 mcg, as in micrograms not milligrams,  which is 1,667 times the RDA. I buy it at Costco and it dissolves in the mouth. Of course, here is no way to tell if it is helping.

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.

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