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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 Patricia on July 18, 2016 at 6:36pm
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Hello Ana,
My doctor was telling me the other day that there are a lot of women with FFA and they don't even know it. My opinion is that it has always existed, but doctors just did not diagnosticated it correctly. Within the Alopecia world, the FFA is quite new and because it progresses slowly, we do not realize we have it until the damage starts to show. Like you, I knew something was terribly wrong when I started loosing my eyebrows.
My FFA has slowed down and my hair falling is less now. However, I know that what is gone is gone forever. I have been taking Plaquenil for almost two years now, it has shown that it helps to stop the FFA, I also take Finasteride 5MG 0 take 1/2 tablet a day and apply Clobetasol 0.05% (liquid) on the scalp once a day. I have tried several shampoos, but cannot say they have worked for me.
I have stopped the acupuncture since I just did not see more results after more than two years.
Hope this helps.
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Comment by Ana_Brazil on July 18, 2016 at 6:47pm
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Yes! I am going to share this info with my doctor. She mentioned that Finasteride is the drug of use. I understand the hair is gone, and I have heard of some implant that had good results. I just want it to stop, then what comes next comes next, and I will probably try an implant, if I qualify.
And YES they think it could also be wrong diagnostic. At this course that was giving to Dermatologists they called it an epidemic, and I am going to discuss this with her, but as I can see she is a young doctor and travels a lot and it is up to date in what is going on around the world, and she focus on alopecia. I now can have my treatment here and not have to go to the US.
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Just make sure that the FFA has stopped before you do any implants, as the FFA will also attack the new implants. My doctor has suggested that I wait until we are completely sure the FFA has burned itself.
Let me know if you find out more information from you doctor.
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Yes! What they have asked me was 2 years with no inflammation, meaning 2 years with no hair loss. I think the point is, will we need to take the medication forever, and if we stop it comes back. If it is trigger by our Imune system how can we send the right information to it. I know drugs works, but what is actually triggering our body to give this message? I want to learn how to change the message not just fight with it. I hope we get there. I know we can use our energy to do it, this new era is bringing us a load of information on what one has the power to do, and I want to have the power to stop this, and I will, just need to trust I can. We are stronger than we think. I will absolutely share all the information, and if you have more questions, please send my way. All is well and all the best for all of us!
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