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: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 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

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

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Comment by Halfbakedwho on December 24, 2018 at 3:22am

I am coming to the States in February (Florida for those interested in rubbing scalps!) and will definetly get myself some of this.

On the FB page - very active - someone posted a study re: Accutane for FFA. Are you all on that page too? I occasionally post there but I am wary about the privacy problems. However if any of *YOU* would like to connect with me on FB PM me and I will give you my « handle » (which is again not a real name). 

I am still watching my hair fade into my scalp-sunset (though it’s not a fade). I still don’t want to take the Finasteride. 

In other words, all the same, all changing... comme d’habitude. 

Très bonnes fêtes !!! Bisous. 

Comment by Plf on December 23, 2018 at 6:54pm

Fantastic news illustr8r, doesn't look like we can purchase in Australia, will endeavour to see if I can get it posted, thanks for sharing, hope you have a fantastic Christmas, and a healthy 2019

Comment by illustr8r on December 22, 2018 at 9:05pm

Just wanted to share that I’ve had some success with my new oil, Eterna-Grow for Men by Prairie Rain Botanicals. I have seen and have had it confirmed by my hairstylist many new hairs coming in my widows peak and my thinning temple area. What’s scarred is scarred of course but every few new hairs helps my pixie look intentional. I now use Castor Oil twice a week and this new oil the other days.

Merry Christmas everyone! 

Comment by Minter on December 2, 2018 at 7:59am

Wow Halfbaked who, those are some awful side effects!  In a way it is good they started so quickly so you knew to stop taking it right away.  

I agree completely with you, better to be happy and healthy in body and brain!  Hair is hair and can always be replaced, mental health well- that is sometimes not so easily repaired. 

Comment by Halfbakedwho on December 2, 2018 at 3:46am

Interesting - I am not sorry at all - I'm relieved. Especially given I am on antidepressant medicine permanently, probably until my dying days, and no doctor thought to consider interactions between the two medicines. I'm also not surprised because whatever side effects are on a label always seem to have my name in parenthesis on the side (as in, "Half-Baked-Who this is for YOU) not that I'm paranoid or anything but really. Really. 

Comment by Plf on December 1, 2018 at 6:18pm

Sorry to hear, that the finesteride effected you like that, one step forward, two steps back..so frustrating, when I discussed side effects with my dermatologist, she said she had never heard of the hair shedding..didn't inspire confidence as I had also read it in the literature and on this site.  So now maybe we hang out in hope for the topical product to come on the market.  Yesterday was a really bad hair day for me, it was 32 degrees and this horrible hot wind..so whilst you in the northern hemisphere are cooling down, we continue to get hotter   On the upside Christmas is just around the corner which means some lovely catch ups with family and friends.  Take care all

Comment by illustr8r on December 1, 2018 at 5:23pm

@HBW I’m sorry to hear you had such negative side effects to Finasteride! I’ve read many comments on the usual hair blogs and the comments about side effects range from none to some-mostly weight gain. The shedding would have freaked me out too. What works for some and not others-so frustrating!

My family dr won’t prescribe it without consulting a dermatologist-and I am in between one right now because of insurance. I’m using oil with saw palmetto in it a few times a week in addition to Castor oil. However, she told me I might not be able to take the herb or Finasteride because of interacting with BP meds...again, so frustrating.

Comment by Halfbakedwho on December 1, 2018 at 3:16pm

 Soooo... I lasted less than a week on the Finasteride. I felt foggy. My hair was shedding all over me (yes this is a side effect). The kicker though - the tinnitus. Like a low hum, a foghorn or a refrigerator motor, in my left ear. We’ll see if it gets better. 

I admit I don’t know if some of the side effects are because I read the side effects - though I didn’t read them until last night because of the motor sound in my ear. And there it  was, along with the hair shedding (I had hair all over me this week) which I hadn’t thought related to the Finasteride (though I did wonder why I was losing more hair whilst taking the cure for hair loss... n’est-ce-pas...)... but I am a depression sufferer though I am an optimistic pessimist and yes - another side effect - depression. Mood swings. Weight gain (which depresses me). Basta says I. Ça suffit. It just scares me too much. 

I eat more or less healthfully. I try to exercise as much as I can (though in winter it’s not as much, alas). I won’t go crazy with a caveman or cavewoman diet, and in France we eat bread. So back at square one, or le premier case. I would rather lose my hair than my hard-fought mental health. Besides, if I get a nice hair piece I will be in a good mood : )

Comment by Bloomingdalekid on November 28, 2018 at 7:05pm

Hi Miss Mymble.....  the consultant had samples of curl that were available to match your natural hair.  I always straightened my curly hair with a heating iron, which in itself was damaging, so when we chose the curliness of my unit we selected “wavy” so that it had body.  Since the unit integrates with my own hair on the sides and back, I chose to have a Brazilian Blowout in order to keep the frizz away.... my hair is actually more frizzy than curly.  The “hair” that she ordered was perfect!  I can curl it, straighten it and actually, in the morning when I jump out of bed, I brush it and need to do little more with it to be presentable.  It’s pretty amazing......

Comment by Halfbakedwho on November 28, 2018 at 7:48am

Hi Miss Mymble -

I don't know if the curls are terribly hard in and of themselves to get in a topper but I think it depends a lot on what sort of curl you have. My curls are intense and spirally in some places, loosey-goosey in others - it's not going to be an easy match with the rest. I would just as soon eliminate the whole dilemma and get me some nice smooth waves (ahh sounds so nice) - and wake up like B.Kid with just a swishy comb-thru. Oh yes, yes ; )

 

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