Frontal Fibrosing Alopecia

Information

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

Comment Wall

Comment

You need to be a member of Frontal Fibrosing Alopecia to add comments!

Comment by Halfbakedwho on November 27, 2018 at 3:47pm

I love it Bloomie Kid :)!

I just came across a picture of myself on FB - To me, my hairline looks sooo high and it's higher now (to me) and thinner, a month later. 

I am going with the Finasteride to see what happens - it's sort of a last hurrah before I start to seriously consider the helper hair. I was just at the wig place last month (or was it the beginning of this month??) and it seems that since that appointment, the top is even thinner. And I can understand that others don't notice, that I can still get away with just pushing my hair forward...but I have lost a LOT of hair over the past two months or so (is it going faster or is it my imagination? Do you all go through this waxing and waning?) ... and if the loss keeps up at this pace I will have bonded hair too by March or so! 

BUT - as time goes by (I think this is interesting too) my acceptance has gotten a lot better. I am more just "whatever" about this. Sometimes in the middle of the night I fuss with my scalp and worry, but mostly I just am very glad that the bonded-hair-option exists. Worse comes to worst, I will have to blow my remaining hair straight to fit in with a hairpiece. Again, I can live with that. The only thing that concerns me ( a bit) is how will I deal with it when I go on my hiking trips? Oh, first-world problems... 

Comment by Afraid on November 27, 2018 at 12:18pm

Most definitely amazing!! What resilient and resourceful ladies and encouraging to those moving towards taking the plunge.  Thank you 

Comment by Lara79 on November 27, 2018 at 12:04pm

Looks amazing!

Comment by Bloomingdalekid on November 27, 2018 at 11:10am

This whole thread of comments is interesting.... and so glad that many have found hope through this great group of people that are all suffering from this horrible disease that doctors don’t really know how to treat.  We are kind of like the guinea pigs in an experiment to see what might work without killing other organs in our body. I, for one, am not willing to take on the risk of those side effects not knowing what damage it could do.  I bit the bullet and invested in hair... a bonded unit.  I still have enough hair around my sides that the unit can be attached with links and then bonded to my forehead where the hair has receded.  History shows that the hair isn’t going to grow back - even with all of these treatments talked about on this website, so I took the plunge.  Here is a picture of the unit....  

Comment by Lara79 on November 27, 2018 at 9:45am

I found a doctor online who prescribed it but he has retired now so managed to get 6 months supply and then will have to see if my NHS team will prescribe if there is evidence it did any good.

It looks like a version of it may be released in a couple of years though:

https://www.belgraviacentre.com/blog/topical-finasteride-male-hair-...

Comment by Miss Mymble on November 27, 2018 at 7:45am

HBW, cool to hear Finateride is covered in France. I’m sure the same or some similar rules applies for DK then (but I will check it out to be sure).  It was the whole off-label that made me suspicious about it not being covered. I actually think I’ll at least discuss this treatment with my dermatologist now. I’ve also read that some women with PCOS who experience hairloss are prescribed Finasteride (and similar drugs). Somehow that just made me a little more relaxed about it. Not sure why. Maybe to know we’re not the only group of patients who are prescribed off-label drugs. 

Your comments about the stress. Yes!! 

Lara79, yes please let us know how it goes with the topical Finasteride. Does your doctor prescribe it? I would prefer to use it topical instead of orally. But had no idea that was possible. So thanks for putting it out here.

Comment by Halfbakedwho on November 26, 2018 at 5:19am

Again, I am not really on the internet so this is just an exception. Really, really exceptional (OK I am trying here). 

EVERYTHING or practically everything is covered under our French system. Only homeopathic stuff isn't, and yes if things are being prescribed out of context. But my Finasteride is covered, Miss Mymble. My Minoxydil wasn't though, and it was awfully expensive. 

I tend to react a lot to medicines so I feel better taking half the dose for now. 

Wilhood - I am so annoyed at doctors attributing everything to "stress". Notice that they would most likely not give this catch-all meaningless explanation to MEN. True enough, it is more stressful for women to live in the world - but not taking our health issues seriously certainly doesn't make it less stressful...

I went through that with my old doctor in my old town. So f-ing annoying... 'scuse me. 

Comment by Willhod3 on November 26, 2018 at 4:50am

Hi I’ve been using Saw Palmetto for the past couple of months, whilst no lost hair has grown back, what’s left continues to grow thickly and quickly after a hair cut, and, thus far, my forehead appears to have stopped getting any higher. I’m also taking curcumin , and at night a tablespoon of black seed oil. I’ve also found meditation helps as every clinician I’ve seen, and God knows Ive seen quite a lot, some of the leading experts in the UK , and they have all stated stress makes the condition worse. But then Stress is the Doctors stock answer to everything these days.

Comment by Lara79 on November 26, 2018 at 3:16am

I was on finasteride for 6 months but had to stop due to breast pain and a lump that developed. Had it checked out in breast clinic and all okay but I stopped finasteride orally due to this. The lump vanished about a month after stopping.

You can get topical finasteride from a pharmacy in Italy so I’m trying that instead. If it does anything amazing I’ll let you know. I’ve been on it for over a month and so far no weight gain or breast symptoms though.

Comment by illustr8r on November 25, 2018 at 10:36pm

I decided tonight to try topical Saw Palmetto. It’s supposed to have similar qualities as Finasteride. I’ve had good luck with Castor Oil so let’s see what this stuff can do. It says expect results in 3 months. I’m going to be watching my temples closely.

Good luck ladies with Finasteride! Fingers and toes crossed for future success stories! 

 

Members (602)

 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service