Replies to This Discussion

Permalink Reply by Debs on January 7, 2013 at 12:52pm

Hello Veronica and welcome to this support site. Please see the 'medications' section of our frontal fibrosing alopecia group, we are all posting the different meds our dermatologists are using. There is no one drug that can work for everyone, so you will see we are all using different drugs/doses. Good luck and please ask the rest of us any questions to gain clarity for yourself. There are other ladies in Canada in this group, I am in the UK. XXX

Permalink Reply by Jules UK on January 11, 2013 at 6:44am

Hi Veronica, welcome to the group. You'll see that we're all at different stages of FFA and it doesn't necessarily follow the same pattern for everyone. At first, I wanted to go straight out and buy a wig - I thought my hair loss would be sudden. I think it was just part of the shock of the diagnosis. Have a good weep if you need to - it can be calming; we all react in different ways. I'm sure you'll find the companionship offered in this forum helpful when you need it. xx

Permalink Reply by Goody on January 22, 2013 at 6:47am

Hi! This is my first post to this group.
I first have to say how beautiful everyone looks. I would never guess anyone has any issues with their hair. Everyone looks vibrant, active, and healthy. I think because we all strive to take care of ourselves, this diagnosis doesn't sit well.

When I was 30, eight years ago- I started to realize that my eyebrows were disappearing. A few years later, my eyelashes really stared to thin - as did the left front side of my hair. Because I was pregnant and / or nursing throughout this time, there was little room for experimentation with products or dermatological treatments.

All doctors tried anti-inflammatory shots. The atrophy of the skin that followed just made the issue look worse and I felt terrible.

So - while my hair may not be my strongest feature, nobody knows but me. Eight years after experiencing initial symptoms of FFA, there are a few things I have tried which yield positive results.

1. Use Latisse on your eyebrows and eyelashes. Although not a perfect return, it looks much better. I can get an almost perfect look w makeup.
I assume that the reason for the less than 100% return is the time between noticing the hair loss and the start time for treatment with Latisse. Pregnancy was worth it!

I do not recommend eyebrow tattoos. I do not know one person who has them that would do it again. Over time, your face changes and tattooed eyebrows look obvious where as without the tattoo makeup tricks are more natural and look much better. Sometimes much better than before the eyebrow issue began.

2. I stopped scalp shots. It just doesn't yield results for me or for anyone experiencing this particular type of alopecia from what I have heard.
Instead I use Rogaine for Men. I have tried the Women's version and it didn't work for me, although the stronger men's formula (5% vs. 3%)seems to work in three ways
- thicken areas previously thinning
- thicken hair not experiencing thinning to create a fuller effect
- minimizes scarring to allow regrowth in thinning areas - not yet scarred.

From what I have pieced together from the numerous doctors I have seen since I noticed "the problem" here is how FFA works:
- an outside factor (over styling, stress, illness, etc.) increases inflammation to the hair follicle.
- hair turnover increases: This usually goes unnoticed and can be attributed as a "bad hair day". Some affected hair returns and struggles against outside actor to thrive.
- struggling follicles stop producing hair if outside factor or inflammation persists.
- follicle scars over, negating chance of regrowth.

Understanding this process somewhat helped me, in that now I feel I can stop some of the scarring from happening vs. what I previously thought which was that once hair loss is noticed it is too late to stop spread. While it may be too late to regrow in some areas, I have been able to stop the condition from spreading or worsening so far.


3. I use only natural hair products and color / highlight my hair with an ammonia free highlight solution just twice a year vs. every 2-3 months.

Again, bottom line - I swear I was shocked to see some of the pictures in this group because I can't even notice there is a hair issue. Everyone looks vibrant, happy, healthy and gorgeous! Women are too hard on themselves!

Permalink Reply by Veronica (Renata) on January 23, 2013 at 1:07am

Hi goody
Thank you so much for the information you have provided. Very helpful

Permalink Reply by PamW San Diego, CA, USA on January 26, 2013 at 10:21pm

Hi, Goody. I have a question about how you stopped the progression. Do you feel that you stopped it mostly with Rogaine? Also, are you bothered by itching and burning?

Permalink Reply by Goody on January 31, 2013 at 8:10pm

Hi! I do think I stopped the progression mostly with Rogaine. When I used the women's version at first, I was discouraged by the results.

A few months after stopping use of the women's version, I noticed the condition worsening. I felt like more hair would come loose during styling and the recession seemed to be worsening.

When I started using the men's version, I noticed less to absolutely no hair coming out when I styled my hair and some regrowth in thinning areas that had not yet scarred. My hair never came out in an alarming way - but i feel that without Rogaine more hair does come loose. More hair is better!

I haven't really experienced any itching or burning associated w Rogaine use. Hope this helps

Permalink Reply by KarenGinny - Iowa, US on March 14, 2013 at 11:21am

I'm also curious about your Rogaine use. I haven't tried it since it is expensive, and I know it won't help the areas on the front of my head where it is already bare. But I do have a thin patch in the back of my head and I wonder if it would help regrow some hair back there. Once you start using it, how often do you use it and if you stop then does the hair just fall out again? I can't imagine having to use it for the rest of my life. I just don't have the time to mess with my hair that much. Thanks for any info you have! Karen

Permalink Reply by Chrisy, MA USA on March 14, 2013 at 8:17am

Hi Goody,
I was really interested of what you mentioned about rogain for men and I'm thinking I might give it a shot. I am 37 and my eyebrows started falling out 3 years ago and then my eyelashes. I tried Larisse about a year ago but it didn't help me. My eyes were too sensitive. Recently I've seen another derm who diagnosed me with ffa. Since then my hair is thinning out extremely. My hair line is moving up and up. I currently take plaquenil and I apply some cortisone solution to my hair line and eyebrows. I noticed that my eyebrows don't fall that much but no improvement with the hair line. Do you think I should give rogaine a shot?? I'm a little hesitant bc once you start you cannot stop. Do you take plaquenil or anything else??

Permalink Reply by sammi on April 3, 2013 at 3:45pm

Hi Goody this is my first posting on an internet site so bear with me I am 58 and have had FFA for approx three to four years and I agree with all your facts I had a very good GP who recom. me to Prof. Messenger in Sheffield who diagnosed my problem and then sent me to Dr Harries who I have been seeing for about 2 years, who all you all say has an excellent and understanding manner. He told me recently that they are trying to register FFA as an autoimmune disease! which ties in with the inflammation. I am know looking very serioulsy at my diet anti-inflammatory and swear by Regain for women which has improved the fullness of my hair and the use of Nioxin shampoo and condition which I now buy in Primark! as opposed to the internet. I am so glad to contribute to this site for a long time I have been reading everyones comments! I intend to share any information and helpful advice I come across.

Permalink Reply by CJ- Christine from Ottawa Canada on January 11, 2013 at 7:51am

Hi Veronica,
I'm in ottawa but part of a fledgling group that will be getting together in Toronto on the 28th of this January. Send me an email at Christine@canadianskin.ca and I'll get you hooked in.. You are NOT alone. There are about 10 of us so far with either FFA or LPP or both.Also there is information on the CARF website.once you email me, we can set up a time to talk. Getting the diagnosis is hard as everyone on this site will agree. Treatments are hit and miss, and it would seem that some appear to work for some people, but we don't know whether its the treatment or whether the disease would back off on its own. It's all a bit crazy-making. It's good to talk to others. It helps. Drop me a line and we can get you connected to our Canadian group.

Christine

Permalink Reply by Veronica (Renata) on January 12, 2013 at 12:16am

Hi Christine
Thank you for responding to me,I have joined so many forums, but everyones response is as confusing as I have been. I am not sure what a fledgling group is? but i will send you an email asap.
Yes i would like to get set up with your group,
my email is renatamazzaferro@rogers.com thank you and eager to talk to you

Permalink Reply by Veronica (Renata) on January 12, 2013 at 12:34am

My number is 416-844-5997 and I visited the carf website, and I would like to hear more about it.
thank you christine

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