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: 601
Latest Activity: Jul 8, 2023

Discussion Forum

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

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Comment by Debs on September 13, 2013 at 2:27am

Hi ladies, thanks v much for sharing your experiences of the steroid injections.

Liz, your wig will be secure without a wig cap, it is the perimeter of the wig that secures it so the wig cap is really not necessary. I never wear one and was advised not to by the wig salon I use, they also make wigs for the film and theatre industry so are very experienced. I get my scarves mostly from Acessorize the high street shop. Costs vary between £12 to £15 for silk.

Comment by Sam on September 12, 2013 at 6:57pm
Sorry for your loss Christiekd and thanks for sharing your regimen. For those using Rogaine on your brows, did you find that your brow hairs shed similar to hair shedding before it grows? I am worried it would shed what I have and not grow back...
Comment by christiekd on September 12, 2013 at 3:08pm

I had a setback about a year after taking plaquenil when everything was going fine for a long time. I believe it was because of stress in my life - my mother-in-law became ill, was diagnosed with cancer and died all in a span of about 10 days during this time. Afterwards, I started shedding again. It was a total relapse with itching and everything that went on for a while 3-6 mos. I also have to admit that I had been feeling so good for so long that I was not always remembering to take my medicines regularly.

When I went to my doctor, we started all over again with my meds: plaquenil, back on doxycycline, steroid creams, and steroid shots. I added protopic, and I also began Rogaine in earnest. Finally, I began taking tumeric after reading about it on here.

Well, it took a few months, but now I am back on track and am no longer on antibiotics. I am still taking everything else. My regrowth of eyebrows has been astonishing to me as well as the fine hairs around my hairline that have recently started growing. I thought they were gone forever. I'm also trying not to get too attached since we all know things could change rapidly.

From this relapse, I have learned a couple of important lessons:
1) Don't get lazy with my regimen of medication and lotions.
2) Try not to stress! I do this by exercising daily and taking time for me each day.

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.
 

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