My thoughts on frontal fibrosing alopecia

My initial KZbin video! I have so much going on and I feel like there are so many other women out there who have to be going through this too. Losing my hair, going through menopause and taking HRT, and transitioning to gray! Lots to talk about, so join me on this journey and hopefully we can learn from each other!

[@Kathysvlogchannel]

Hi Karen! I am 56 and was diagnosed two years ago with FFA. I have yet to treat it and don’t think I will. My have receded lots especially above my ears. I keep watching videos and question if I should use steroid prescriptions but as of now I deal with skin cancer too so “one issue at a time” is my mindset. I continue to document as well. I find it helpful to document and sharing is caring.

[@kw9859]

I have just been diagnosed with FFA and I'm only 30. I feel your pain. I feel terribly distressed and insecure. I've just started a bunch of medications. You should ask your doctor about trying Dutasteride. This medication has the most research to support it's effectiveness in stopping FFA and is considered a first line treatment. Hydroxychloroquine is considered a second line treatment but can be important to reduce inflammation, so you might take both. I hope your treatment works and you don't lose anymore hair, and I wish the same for myself 😢 This disease is horrific.

[@aureliasieberhagen9340]

Good day, how much Dutasteride do you take every day? I am on Finesteride 5mg a day.

[@michellescarborough16]

Hi, I have FFA and have had it since 2018. I know your pain, thoughts and feelings. I'm also a RN. I have done a lot of research on this and basically with the medications, they really don't know what will work on whom ever. These drugs I chose to not take because of their toxic side effects. I started noticing back in 2018 that my eyebrow had a spot missing. I went to the dermatologist and after her assessing my scalp and seeing my eyebrows, she diagnosed me with FFA. I was dumbfounded to say the least. I couldn't believe that my hair was never going to come back. I watched as my hairline receded at my forehead and on my temple area. There is also hair loss above my ears and my eyebrows are sparse. I have done a lot of researching cosmetic solutions for this problem. You can still look normal but it will require effort on your part and some money. What I mean is a good topper or wig that looks natural will cost you money. I know of every brand that will look natural. I'm not taking any medications for this and I get checked every year. This is an autoimmune disease that hits mostly menopausal or post menopausal women. It can happen to younger women, but it's more rare. If you have any questions, I would be glad to help. Take care.

[@aureliasieberhagen9340]

Hi, I also have FFA. I was actually amazed to see how many people do have it and that I was not alone. I am going through the same issues as you. I am 54. My Dermatologist also did not recognize the disease until this year. I was complaining at him for almost 5 years that I am losing my hair. I lost my eyebrows 6 years ago and microblade it every other year. My eyelashes are currently falling out and my hair line is also receding with one side more than the other. I am on Finesteride 5mg each day and using topical Minocidil 5% twice a day as well as Pimecrolimus 10mg in the evening as that tend to make your hair oily. But I want to go on Dutasteride now as I understand it is more efficient than Finesteride. I am considering a topper at this stage as my hair doesn't look good anymore. This disease is terrible and depressing. People doesn't seem to feel your pain. "Just get a wig" they say. To get to the stage where I am now to consider a topper was a big mental issue for me. I don't want a wig! I want my hair back!

[@mandygreer3732]

Me too, sister! :)

[@mandygreer3732]

Hi :). I have had FFA for about 5 yrs. now. I’m 66 and am and was then in very good health so it really came out of the fricken’ blue! I tried some medications but they really never helped so I don’t take anything now. I’ve lost about 2 inches from the top hairline and sides. Though it’s never a good time to lose your hair, I feel losing it at this stage of life is especially difficult. (All the menopause stuff and now THIS?!) I did recently purchase a topper and can comfortably wear it out, though the lack of side hair will probably push me toward an actual wig eventually. It’s so supportive to hear from other FFA people. Thanks for putting yourself out there!

[@nubianess100]

I’m a 58 year old post-menopausal woman. My eyebrows fell out a week after my father died in May 2022, 3 months later, my hairline went back about 1.5cm. I contacted a Trichologist who told me it looked like FFA, and that I needed to see a Dermatologist. I saw the Dermatologist in October 2022 who confirmed the diagnosis after bloods, biopsy, examination, and photographs. I have been taking Hydrochloroquine daily, and using Tacrolimus ointment at night. I can say that it hasn’t progressed, and my hair hasn’t grown back. Strangely though, I just got back from the tropics, and whilst there, some stray hairs started to grow. Maybe a miracle might happen.

[@gerdahuertas26]

I have ffa. Lost my brows. I know how you feel. I know there is no cure. I use scarves and wigs to feel better.❤❤

[@jackieloadman432]

Hi, I was so pleased to see your video. I was feeling alone with this condition. I have just been diagnosed with FFA - I have lost about 3cm already and it seems to be all around my hairline (front and back) I am 62 and it’s been going on for a few years but didn’t really notice til my husband took a picture of me on a rollercoaster ride with my granddaughter 😱 it prompted me to seek help. I am on steroid cream and will hopefully start medication soon. Thank you for videoing your progress …. I will keep watching all the way from Ampthill in England 😊

[@DianaMarieSix]

I have it too. I don’t like taking all of the medication. It’s really frightening

[@user-ss2wv2fy4q]

I just saw your video on FFA. Your experience is identical to mine. Apparently had it for years and didn’t know. Such a shock to get this diagnosis…just a few months ago. Just started Doxycycline and Clobetesol. Already have a headache which I’m sure is from one of these meds and I’m only on my second day…😣 I’m not on any other meds except for HRT…very low dose. I’ve been extremely healthy and don’t like to take meds and now I’m on two new ones all at once…plus tretinoin cream which I’ve yet to pick up at the pharmacy. That is for this new “orange peel” texture on my face that I NEVER had before. I’m taking supplements for hair growth and applying rosemary oil several times a week on my scalp. Anything natural that isn’t a drug…I will try! 😬

[@TheePrettyGirlSwag]

Dr. Ken Berry here in KZbin; see if he has a video on this condition.

[@clarapudle]

Hello there. I feel your fear, because it is also mine. You are not alone in this. Go see another doctor, if you feel that your current dermatologist does not sound secure about this situation. You have doctors who specialize in hair and alopecia cases. If I had been diagnosed correctly by the first dermatologist that I saw, I woudn't had lost so much hair. Stay strong, you look beautiful.

[@arleneshepler9180]

My hair has thinned so much at the frontal hairline. I attribute it to meds for sure and aging. My side bangs are almost non existent. You have much more hair in the hair line than I do.zI hate this! I am 76 so I know age is a factor.

[@sjoshua5144]

I also have FFA 😢 Please keep posting because it's a help as i always feel so alone x

[@jlillil]

I was so happy to see your video. I was also just diagnosed with FFA . I also lost my eyebrows about 7-8 years ago and then most of my body hair. So Strange. I thought something was going on, so I asked my dermatologist. She said it was FFA. She prescribed me Finasteride and Hydroxychloroquine and the drops Mometasone solution. I haven't started any of it, because the side effects scare me. But, the Dr. recommends i start with Finasteride and then start Hydroxychloroquine. If anyone on here knows of a group I can join, please let me know. It was nice to see this post, but it's not really current. I hope the lady in the video is doing ok. I'm also 56 and I have already lost about 1/2 inch. I thought my hairline was receding, but now it's really showing. Does anyone else sweat on their forehead?? I noticed it this summer. I sweat on my forehead so much and I don't have eyebrows, so the sweat drips in your eyes. It's really bothersome. Please reply with a group if you know of one. I don't know anyone with this crazy autoimmune disease. I also hate to complain, because I know it will not kill me and it's not painful, but its very depressing.

[@lailasaihi8729]

😢I have FFA the medication didn’t help

[@LaVidaDe_Carlota]

Hi Karen! We can help you! How can we contact you?