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: 602
Latest Activity: Nov 25, 2024

Discussion Forum

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by lordiron Nov 25, 2024. 10 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14, 2024. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

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Comment by MJ on January 23, 2014 at 6:31pm
Thanks Jean. I am going to look into it further.
MJ
Comment by Jean on January 23, 2014 at 5:02pm

MJ

The acupuncture is to help regulate my autoimmune system and improve my gut.  The Chinese practitioner said it would be a long process but I'd rather see him than subject my body to drugs which will probably do nothing for the FFA and may further weaken my dodgy immune system!

Jean

Comment by MJ on January 23, 2014 at 4:42pm
Jean, i have been thinking about trying acupuncture as well, but have not checked into it yet. Is it supposed to help with reducing inflammation in the body in general, or is it targeting something specific?
MJ
Comment by Jean on January 23, 2014 at 2:22pm

Saw my derm yesterday - my hairline hasn't receded any further but my hair has definitely thinned.  I asked about Regaine and she thought it might help but only if my scalp was clear, because it may irritate the redness.  She wanted to put me on steroids or long-term antibiotics but unless I have some assurance of a positive result, I'm not inclined to use powerful drugs in the HOPE they will slow down progression of the FFA.  Unfortunately, the derm couldn't give me this assurance.  I'm sticking with the acupuncture and sensible diet to improve my autoimmune system.,,,,,,,,, 

Comment by Meadow on January 23, 2014 at 3:59am

Hi, I have just been give L-Tyrosine to take for 3 months - it is an amino acid I believe, has anyone tried this?

Comment by Rita - Canada on January 19, 2014 at 8:34pm

http://www.carfintl.org/_docs/newsletters/CARF_Newsletter15_Nov2013...

This website has a great deal of questions & answers for alopecia.

Comment by Rita - Canada on January 19, 2014 at 1:18pm

Hello Ann, I was on doxycycline 100mg per day for several mths. Also the clobetasol on scalp which she left it to me as to how often I applied. (Acutally got acne eventually from this lotion).  Then Derm said you can't be on doxy forever so she weaned me off by taking 100 mg ev. other day for a few mths and then my hair shedding seemed to lessen and only when I wash my hair do I lose more hair..  Derm said she'd leave a prescription on hold for doxy & if it should become worse again, back on for a good 3 mths then see her again. She said she normally works with 3 mth sessions of doxy after the first bout.  i never had a problem with the antibiotic but I did faithfully take a strong probiotic daily to avoid same.

Comment by Ann on January 19, 2014 at 12:44pm

Hello,  I know there has been many comments regarding various drugs that are taken for LPP/FFA.  I have been taking 200 mg of hydroxychloroquine for a few months.  My derm wanted to increase it to the therapeutic dose, 400 mg/day.  My GP was concerned because I have only one kidney.  My derm then recommended doxycycline, but I'm concerned about taking an antibiotic long term.   Has anyone come across this "complication" to taking meds?   I don't know what to do. 

Comment by Celia on January 19, 2014 at 7:40am

Liz - I never realised you have friends with FFA.  I hope that you all support each other well - I presume they are local to you ?   I guess when any new sufferers google the problem - the first face they see on this forum is MINE ! The reason being that I set up this group, thanks to Alopecia World.  There is no way that I know of to change it.  However my stance has always been to tell nobody what my problem is.  So - whilst friends may notice my hair is different - my plan is to start with thin wigs to match - eventually - and then - who knows. I think we have all learnt a lot from each other here and that must surely outweigh the downside that others may take a peek - BUT - only if you tell them.  Your friends with FFA will surely wish to join this forum and take advantage of the amount of knowledge here.  I am about to start with a new dermatologist.  He won't have the magic potion - but I hope to start over. x

Comment by Jean on January 19, 2014 at 6:09am

Just back from a fantastic holiday over Christmas and the New Year in Jamaica.  No real difference to the FFA I'm afraid (in fact I think my hair is getting thinner) but I'm seeing my specialist on Tuesday - not that she'll have anything else to offer!  Sorry to be a pain, Debs but please can you let me have your link for the terrific fact-sheet you put together.  It will be useful to show my derm what other's are trying.  Many thanks  Jean x

 

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