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FFA
Hello everyone,
I have recently joined this group. My FFA was diagnosed (finally) in October 2013. However, the road to get this diagnose has been long.
I started losing my hair and eyebrows in 2010, but since I was in menopause, I thought this was probably part of it. However, the loss continued and in April 2011 I finally had my eyebrows tattooed, as I had completely lost the lateral part of them. I have also lost the hair on my arms, legs and armpits.
In March 2012, I went to see a dermatologist, who told me that it was perfectly normal to loose hair at my age (I was 62). I am generally in good shape and my health is good, so I just did not accept that this was ‘‘normal’’.
I had been researching about hair loss for a while, so in April 2012 I decided to start laser treatments and they did helped. Although my hair was still falling, the quantity of lost hair diminished a lot, and I even got some regrowth on upper part of my hairline. To this day, I still have the laser treatments.
About 6 months ago, I noticed that the hairline of my temples, especially the right side, had receded about two centimeters and maybe 1 cm on the left side. Last month, I went back to see the dermatologist and told her that I now had bald spots; she immediately started to examine me and said that everything seemed to indicate that I had FFA. She recommended cortisone injections every 6 weeks. No antibiotics, no creams, no biopsy just the injections.
After reading all your comments, I am wondering if this treatment of just injections is the right one. I have an appointment to see my family doctor and I will ask that he refers me to another dermatologist.
Also, I started seeing a Chinese doctor for acupuncture. I firmly believe in acupuncture since it cured me of a chronic sinusitis some 15 years ago. I had my first visit this week and the doctor told me that Western medicine will probably not do much for my FFA, since creams and injections alleviate only the symptoms, but they don’t go to the cause of the problem.
So, right now, I still have my laser treatments, steroid injections and now acupuncture. I am hoping something will work. I will keep you posted.
Patricia (Canada)
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Comment by Rose on November 1, 2013 at 9:31pm
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what is FFA?
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Comment by Patricia on November 1, 2013 at 11:16pm
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Frontal Fibrosis Alopecia -FFA
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Comment by Lexi on November 2, 2013 at 6:34pm
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And how did they finally come to that diagnosis?? I have never had a dermatologist give me a diagnosis. EVER.
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She said I was not her first patient with it, and she just said that I have FFA, which is why I am looking for a second opinion. I know my hairline has receded mainly on my temples, but I never had a biopsy. Yes, I am confused.......
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So just by sight, she came to that diagnosis?
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Yes, and I still coping with that diagnosis. I am seeing my family doctor in 10 days and I will ask him to refer me to another dermatologist.
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Two months after starting acupuncture treatments, I am starting to see some results. In the last two years, washing my hair was always a confirmation of my hair loss, but this week I lost exactly 6 hairs (yes I counted them) while washing my hair, I was so happy because I am finally seeing some positive results. I have said it before, I am a firm believer on acupuncture and it is working again for me.
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So are you just no longer losing hair in the shower, or is it actually growing back? How many acupuncture visits have you actually had? And still using laser?
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Hi Lexi,
I have stopped loosing hair, which to me is already a big deal. I have been told that the hair that is lost will never come back, that is part of having FFA. Yes, I have stopped the laser treatment. I have been going to acupuncture since last October, I have noticed good results and plan to continue.
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Comment by Ana_Brazil on July 18, 2016 at 2:44pm
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Hi Patricia, I am consider acupuncture for the inflammation, I am a firm believer in alternative medicine. I am doing more than acupuncture, yoga with chakras cleansing and alignment, quantum physics therapy and products. It took me almost 10 years once I notice hair loss on my eye brow to have a diagnostic, that I believe should be done with a biopsy, which I did last year. last week I went to see a Dermatology Professor and she looked at me and she knew I was there because of FFA. She told me that doctor don't know why so many cases are showing up, they call it here an epidemic. They still wonder if it is an epidemic or they just did not diagnosticated it correctly in the past. I feel a little better that I am going to do another exam to look at my whole scalp this week, and see another doctor in São Paulo (our NY city) who is specializing in hair, and they even had a conference for doctors only all around FFA, so I think I am going to learn a lot and I will definitely share with you all. I feel sad that everything is just starting now, and I am happy that something is actually happening now.
One thing I would like to know from some folks who has FFA and have been here for a while, if they see a single treatment that is working for a number of people, or if everyone is following a different treatment path. I would like to share some of the information with my doctor.
I already know that some one is using:
1) C-Tacrolimus 0.1% solution. Apply 2 ML to scalp twice daily. 2) Finasteride 5MG. Take ½ tablet by mouth daily. 3) Ciclopirox Shampoo 1% - leave on 3 min. when shampooing hair. I’ve had very good results.
Any other treatment that is showing soe improvement, please?
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