Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

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

Location: Dubai UAE
Members: 230
Latest Activity: 11 hours ago

Discussion Forum

Intralesional kenelog shots for FFA

Started by Nancy79. Last reply by Nancy79 12 hours ago. 2 Replies

Hi from Kansas City, My derm wants me to take Kenelog intralesional shots. Has anyone had bad side effects from these shots? I have read about  bumps the size of fly bites that never go away. I have also read the skin of the bumps becomes very rough…Continue

FFA and skin problem

Started by Charlotte. Last reply by Will Be Healed 15 hours ago. 12 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

FFA my new prescriptions

Started by Michjo57. Last reply by sallylwess 15 hours ago. 36 Replies

I went to the University of Colorado this week to see a doctor who specializes in alopecia and pigmentation disorders. I had been diagnosed by biospy with lichen planiplaris this summer. The new doctor took one look at my head and said I had FFA…Continue

Dutasteride

Started by Jacq. Last reply by Annie Mar 17. 4 Replies

Hi, I have just been diagnosed with FFA but my receding hairline is quite bad already. Im 42, lost my eyebrows 5 years ago when they diagnosed underactive thyroid. I will be starting on Dutasteride. Anybody had much luck with halting things? thx JacqContinue

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Comment by NatalieW 11 hours ago

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. 14 hours ago

Oh, and I do take a probiotic daily too.

Comment by Maddy, California, U.S. 14 hours ago

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 years....so, 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 this...it is an incredibly frustrating and baffling condition!

Comment by NatalieW 15 hours ago

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 15 hours ago

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 Thursday

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.

Comment by Brooke on March 4, 2015 at 2:08pm

Sallywess: Your story touched me too.   I also lost a daughter many years ago and can identify with what you may have experienced.  Fortunately, I too have other children (all boys) and they have kept me going.  Now I also have granddaughters and sometimes see fleeting reminders of my daughter.  Bless you.

Comment by sallylwess on March 4, 2015 at 1:39pm

Kat, that is very interesting!

Comment by Sas Holland on March 4, 2015 at 8:40am

Thanks Kat, I will certainly have a good look into that option!

Comment by Kat on March 3, 2015 at 5:39pm

Hi Sallylwess & Sas, I have seen your comments that you were looking for curly hair that isn't black or dark. I found this link for a swim-hat-thingy and thought that maybe you could use that hair and get it made into a topper? http://hatswithhair.com/Order-Hybrid-Curl-Samples.aspx

 

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