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 Annie on September 12, 2013 at 2:16pm

I have a question for those who have been on Plaquenil for a while. Did you continue to have flare-ups while taking it? I started taking it June 22. My doctor said it would take a couple months for it to affect the shedding. I felt like things were going fine until about a week ago when I started shedding a little heavier, and now my scalp is as tender as before I started taking the Plaquenil. Should I gradually get better, or will I continue to have setbacks while taking meds? I don't have another appointment with my doctor for another month.

Comment by christiekd on September 12, 2013 at 1:56pm

I agree with Carol. Using Rogaine has really helped by my hairline and my eyebrows. I would also like to add that using Rogaine along with Rapidlash has caused my eyebrows to fill in completely. While they aren't as thick as they once were, I now have hair all the way across. I even feel comfortable not wearing makeup on them, which a month ago, I would have never done. Feeling so much better about them.

Comment by Annie on September 12, 2013 at 10:36am

Alice, my doctor gave me completely different advice regarding Rogaine. He said to use the foam morning & night for the first 6 weeks, then once a day after that. He also said that if I chose liquid Rogaine to use it twice daily even after the first 6 weeks.

Comment by Sam on September 12, 2013 at 9:02am
Christiekd, do you mind sharing what lotions, potions and meds you are taking that are working for you? Which is great to hear btw.
Comment by Chrisy, MA USA on September 12, 2013 at 8:20am
Deb, I also had 3 sets of steroid injections about 10 weeks apart. I was ok with the first two sets but the third one really messed me up. I got some dents on my head where the injections went in which they dissapeared in about two months but my eyebrows are still suffering from indentation. It's been three months I stopped using the steroid cream as well and you can still see them. Unfortunately all the hair I gained on the euebrows by doing the steroid cream and injections are gone but let me tell you that dents on the eyebrows really look bad. It looked like somebody carved you with a knife. After three months things looks better but still there. It is hard to tell if steroid injections help with the hairline but it definitely help with the eyebrow hair but you have to keep getting them at least every two months.
Comment by christiekd on September 12, 2013 at 7:59am

I also have received injections - twice in a space about a year apart. Both times I got dents where the injections were placed, and both times they eventually went away. I also think they helped and would do it again if my hair loss increased again. Right now I am not losing any hair and have grown my eyebrows back. I am continuing to faithfully use all my lotions, potions and medication in the hopes of keeping things as they are now.

Comment by April on September 12, 2013 at 7:49am
Debs, I had one set of injections about 4-5 weeks ago. I did get a dent where the injections were placed. My doctor said it is a common side effect but does eventually go away.
Comment by Alice on September 12, 2013 at 7:09am

For those of you using Rogaine, what is the dosing? My derm said she reccommended staring out just 2 or 3 times week, but I failed to ask why. I'm wondering if starting slow makes a difference with shedding or irritation. I almost bought some at Costco yesterday but chickened out after reading the precautions on the box.

Comment by Sam on September 12, 2013 at 6:53am
I think the shots should just be done where you have hair so any indentions should not be visible. Of course if u lose that hair eventually it may be but mine were a centimeter back. I just did one so far but I can keep you posted.
Comment by Liz on September 12, 2013 at 4:35am

Hi Debs. I have indentations along the area where I have lost my hair which were not there before I had this condition but were not caused my the steroid injections either. Where I had the steroid injections there are no further indentations but in the last 2 weeks I've lost more hair in that area.
I'm feeling a bit crap today about this condition. Usually I'm ok but I'm now at the stage where wearing nothing is not an option. I don't mind wearing a scarf. I talked to Trendco about not wearing a wig cap and they advised that I should or my wig might not be secure :o( Anyway. Any links to websites selling scarfs would be cool :o) xx

 

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