Frontal Fibrosing Alopecia


Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 237
Latest Activity: yesterday

Discussion Forum

Success Stories?

Started by Lo. Last reply by sallylwess yesterday. 28 Replies

Hello, ladies (I don't think we have any gentleman on here - but if we do, hello to you, as well!), I was hoping to hear back from people who have had some (or maybe a lot) of success with treatment - be that medicinal or natural - or both.  I know…Continue

Hair care products

Started by yukonalopecia. Last reply by SandyCheryl yesterday. 2 Replies

Hi everyone,I would love to hear what you are using for hair care products. I have been using Nioxin Shampoo and Conditioner since being diagnosed in 2009.  Not sure if it helps or not.Do any of you have other products to recommend?ThanksContinue

Temporary tattoo eyebrows and makeup for Rosacia

Started by PJ - MN, USA. Last reply by PJ - MN, USA Apr 16. 7 Replies

Has anyone heard of or tried Temporary Tattoo eyebrows? I ran across this website today off of the National Alopecia Areata Foundation site. If anyone has, I would be…Continue

FFA and skin problem

Started by Charlotte. Last reply by Terri Apr 14. 24 Replies

Hi everyoneI wonder if some of you also have different skin since the ffa startet? My skin is rough and my derm now thinks (after two skin biopsies with no pathological findings) that there maybe a connection with my hair loss. .. I also wanted to…Continue

Comment Wall


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Comment by Will Be Healed on April 3, 2015 at 11:31am
MJ, my homeopathic doctor recommended the moducare and I spoke to my derm doctor about it since I will be taking plaquinal after I get my last eye exam today and they confirm it is ok for me to take together. The derm said it was fine to take both.
Comment by Ann Wilson on April 3, 2015 at 6:50am

That is very interesting and something I will try!! thank you for sharing, Will be healed, and thanks for telling us the length of treatment before you saw results!

Comment by MJ on April 3, 2015 at 6:32am
I just looked up moducare. I am very interested. I wonder if this can be taken along with paquinal? Did a doctor recommend this to you?
Comment by Will Be Healed on April 2, 2015 at 11:25pm
I wanted to share some positive news on hair growth in my eye brows and lashes. I have been using natural castor oil on my brows every night and using natural olive oil on my eye lashes. The lashes that I lost grew back in about 6 months and my brows grew back (they were thinning pretty bad) in about 9 months. The brows are not as full as they once were, but now when I use the brow powder it doesn't look funny due to the patchiness. Thought I would share just in case others who haven't tris this want to try something natural with positive results. I also take moducare, so that may have something to do with it as well, but the Moducare alone didn't help with the lashes and brows.
Comment by NatalieW on March 28, 2015 at 1:52am

Thanks Maddy for your information. I an hesitant to change it when it has dealt with some of the irritation and isn't causing me any major side effects. I will discuss it more when I see him next

Comment by Maddy, California, U.S. on March 27, 2015 at 11:17pm

Oh, and I do take a probiotic daily too.

Comment by Maddy, California, U.S. on March 27, 2015 at 11:17pm

Hi Natalie, I have been on Doxycycline (1 low dose pill per day) for a couple of years now, and I understand your dilemma. I seem to have had good luck on the Doxy, along with Rogaine (Regaine), 1 Turmeric daily and now I have added Moducare. My FFA does not seem active now, nor has it for almost 2, I don't know what to think, but this "program" seems to be working for me right now, so I do not want to change it. I do not seem to have any side effects from any of it, except I am definitely more sensitive to direct sun. So, for now, I think I will stick with it. My doctor didn't seem to be concerned about me staying on the one low dose Doxy per day. I wish you the best with all of is an incredibly frustrating and baffling condition!

Comment by NatalieW on March 27, 2015 at 10:08pm

Oh Sally - isn't it frustrating? I have found Regaine to be quite helpful but it also does irritate my skin so the Doxycycline and topical help to control that I think. I am concerned that if I stop the Doxycycline for 3 months - I won't see the impact of stopping it until it is too late.

Comment by sallylwess on March 27, 2015 at 9:45pm

NatalieW, I think you should get the opinion of another doctor before you decide for sure.  I have stopped taking all topical at this time because I have allergic reactions to them.  I am thinking of taking plaquenil because I have used every other thing, except Avodart, available to try and stop the progression FFA.  I have lost a great deal of hair recently and it is attacking the crown of my head now.  I stopped using Rogaine because of redness and flaking, but want to give it another try.  

Comment by NatalieW on March 26, 2015 at 5:25am

My Derm wants me to stop taking Doxycycline in 2 months when I next see him. His opinion is "why take something you may not need to". But I feel that it manages my redness/irritation on the front of my scalp, and I may not be able to tolerate using Regaine (which is growing some little hairs at the front of my hair line!!) with the Doxycycline. Any thoughts on this? My FFA is quite slow moving so far but certainly still active. I have lost 1/2 inch at the front of my hairline in 1 year but my eyebrows have regrown with Regaine.


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