Frontal Fibrosing Alopecia | My Symptoms, Diagnosis, Treatments
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- Опубліковано 7 чер 2024
- I have Frontal Fibrosing Alopecia, also known as lichen planopilaris. I started with symptoms about 7 years ago, got diagnosed 4 years ago, and have undergone many treatments since. I've done fluocinonide, topical steroids, minocycline, plaquinil/hydroxychloroquine, cortisone injections, Rogaine/minoxidil, PRP, and Keralase.
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Timestamps:
0:00 Frontal Fibrosing Alopecia
0:49 Symptoms of Frontal Fibrosing Alopecia
1:32 Tring to Find a Diagnosis
3:19 Finally a Diagnosis of Frontal Fibrosing Alopecia!
4:28 Anti-Inflammatory Treatments for Frontal Fibrosing Alopecia
5:12 Hair Regrowth Treatments for Frontal Fibrosing Alopecia
#frontalfibrosingalopecia #lichenplanopilaris #hairloss #alopecia #alopeciatreatment #alopeciahairloss #stephaniesangiovese #hairlosstreatment #hairlosstreatments #femalehairloss
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Thanks for sharing your journey, Stephanie. I was diagnosed with FFA at my annual dermatology appt. by my PA-C, not a doctor, four days ago. I was very surprised by the diagnosis and that she knew from my symptoms and looking with a magnifying lens at my scalp what I had. I am very medically savvy as I have multiple, rare, chronic diseases that took years to over a decade to diagnose, but sometimes that causes me to not want to see a doctor for something that seems benign as my life is nothing but doctor appts. I chalked up my eyebrow thinning and itching and then the thinning of hair on one side of my hairline this summer (it started 5-6 months ago) to an allergy to my brow makeup and/or hair products and also going down on my estrogen. I also have hypothyroidism, but it has been under control for nearly two decades and causes diffuse hair loss with out itching. I have a lot of skin allergies, so I just kept removing products to find the culprit while this disease did more and more damage, unbeknownst to me. I would have seen my provider two months earlier, but she cancelled on me, and I am so upset as the FFA has spread since then. She told me at the appt. to use the mometasone ointment I have for my eczema (a strong, topical steroid) in my hairline nightly and to come back in 2 months. As the hair loss started to became noticeable to me on the other side of my head and above my forehead within the last month or two, I am not sure why we are waiting as it will likely progress like crazy in two months if only on a topical ointment. Unfortunately, I was totally clueless while in the exam room and every dermatology provider is booked for 3 months. Right now, my hair loss is not horrible noticeable (I have very thick, curly hair) except on the right side of my hairline and in my itchy, dark brows which are so drawn on now it's ridiculous. I don't want to lose more hair as mine is dark like yours (well, it's dyed now as I'm nearly 50) and I have light-olive skin, which makes it more obvious than in those with light hair and light skin. Since researching things, I feel like my provider should have started me on more meds and treatments right away, but many of them give me terrible side-effects so I'm worried if I'll be able to take anything aside from topical and injected steroids, although steroids give me adverse effects at high doses. It seems like a no-win situation.
The other thing is when this started in my brows maybe 6 months ago, I developed these odd, white bumps all over my face. Some look the same and some are a little different looking, but they are all white although some have dilated capillaries around them (possibly due to my rosacea and telangiectasia). They are larger and more obvious on my cheeks. I have been told twice now that they are sebaceous hyperplasia and have been using a glycolic acid product by Neutrogena which has helped some with flattening them, but not much else, and it's terribly drying as I'm purposely overusing it. These bumps are definitely some kind of papule as I went into research mode after getting the FFA diagnosis. My provider didn't mention any connection between the bumps and FFA, saying the former are common and hard to treat, but I found several research articles in medical journals establishing a link between facial papules (FP) and FFA. I 100% believe the two are related due to the timing, but it seems Accutane is the best treatment for these bumps and I could never tolerate it with my dry, rosacea skin and painful, severe dry eyes. I also have double corneal transplants due to keratoconus and rely on scleral contact lenses to see, so Accutane is just too risky for me due to increased ocular dryness and possible corneal scarring, even if I cared to suffer though it for months on end. I don't know which is worse: the growing band of hair loss or these white bumps all over my face. I find it hard to believe I have yet another rare disease, but cannot find a connection (yet) to my genetic connective tissue disorder called Ehlers-Danlos syndrome, classical type, which is the cause of 99% of everything that is wrong with me and became highly symptomatic 21 years ago. Anyway, I really appreciate hearing from someone so young with this condition as you apparently don't fit the norm. I wish you well and hope your own journey can come to an end soon, but I'm under the impression this is a chronic condition requiring medication for life unless it spontaneously resolves itself. I could barely see your FFA from the front and I do think yours is easier to hide due to your straight hair which is nice. My hair grows up and out without tons of blow drying and flat ironing so it doesn't lay, period!
Thank you so much for creating this video Stephanie ❤
Thank you so much for sharing. I am post menopausal and I really notice the receding hairline when I go to take a selfie photo. The fact that this is auto-immune based makes sense, plus stress and inflammation. I am tackling it with diet, supplements and herbs. ROSEMARY rinse on my hair and R oil to the affected area. The hairs are slowly regrowing on my temporal region. This experience has taught me to finally care for myself much more. I take care to get all the B vitamins and eat a lot of organic eggs for biotin. I eat chicken livers, and organic meat every week. I find B And B12 injections work better than tablets. Just sharing in case someone reading this might find it helpful. Good luck on your hair journey ❤ xxx P.S. I am SO GLAD you found another dermatologist 😅
I have FFA, started in my mid fifties...didn't get the correct diagnosis until I saw a dermatologist for something else when I was 72...other docs I saw for it gaslit me, told me I was getting older. I've lost an inch of my front hairline...some people lose the front part of their hair back to the ears..don't wait...seek a doctor who can diagnose and prescribe for you...
Would minoxidil, ascorbic acid tablets and multi vitamins work in case of mild perivascular mono nuclear inflammation,will hair regrow back in this case
I'm 34 and I've had symptoms for years. It's hell trying to deal with these dermatologists. You'd think they'd have a more surefire way of diagnosing one condition over the other. Instead they send us on a merry go round of wrong diagnoses "guesses" while we lose more hair. It cannot be that hard, this is your job. So frustrating.
Anyway, nothing has worked to stop my hair loss or regrow it yet. I'm really hoping it doesn't get much worse. It's an out of control feeling like there's nothing you can do to stop it and it's permanent. Mine is thinning all along my entire hairline but I have actual bald areas right at the top of my hair line. I wish there was something we could do.
I'm sorry you are losing your hair too. I wish it didn't take so long for someone to get a proper diagnosis, because we lose so much hair in the process. Hopefully you can find something to slow your hair loss soon.
Emilia, Uniwigs has these hair pieces that you can use for your frontal hairline and they also make round patches of hair. You can cut these to suit your area. When I saw this I thought it was a brilliant idea. Check it out and see what I'm talking about. The only true way of finding out what you have is getting a biopsy of the scalp in the affected area. A dermatologist does it. The you will know for sure. Topical steroid solutions are the best thing because it keeps the inflammation down which causes the follicles to be attacked. There is no cure for FFA, but at least cosmetically we can do something to look better for ourselves.
It is so lovely to see your journey and to talk about it so calmly. I have just been diagnosed with FFA and this is the only thing I have watched that has made me feel hopeful :) Thank you Stephanie :)
Check your vit D and ferritin levels … avoid gluten , dairy and sugar … check a trichologist
Hi Stephanie, I also have FFA, thank you for sharing your experience and being so postive and practical. 🙏❤️
You are so welcome!
Thank you to share your journey, I have FFA and I feel so bad many time on my days, I want to feel I am not alone, and find some alternatives to hide the problem and feel confident again, sometimes I don't want to leave my house, because sometimes people are very cruel and they even laugh and that devastates me.
Thank you for your testimony
Loving your video quality, Stephanie!!! I had no idea you were so good at this. Especially the details in your description. I may have to get some tips from you. Awesome video!!! 😊
Thank you!!!! You know I will give you all the tips! :)
Thank you for sharing this. It is so appreciated. I just went to my dermatologist for my annual skin checkup this week when he diagnosed me with FFA. He put me on oral rogain and suggested steroid injections. I was so shocked by the diagnosis that I didn’t really consent to the steroid injections right then and there so I am going to go back and give that a try.
I just came home from seeing my hair doctor. This doctor injected R2 Rapid Recovery Hair Restoration into my scalp a few months ago. I saw some results but is not that much that I do it again and he did not suggest it either, the cost was $4200. Today he convinced me that it is for sure frontal fibrosing alopecia. Finally, after ten years I have a correct diagnosis. He also said a hair implant is not an option for me. I am going to continue with Laser and Rogain therapy at this point. I liked your video a lot. maybe in future hair implant become
This was a great video and helpful sharing your journey. Thank you
You are so welcome!
Thanks for sharing your history, you are awesome, this video will help other people and I find u brave!! Hope u are doing great in 2023!! 🙂
thank you so much!
Thank you! Just got diagnosed. It's disheartening, but I will start my treatments tomorrow with hope it will help.
I hope you have success with your treatments!
Thank you for sharing your experience- I also was misdiagnosed by many dermatologists and other doctors. Spent years and $ going to other doctors. Thank you for sharing your experience. It helps.
I've read it might be related to salicylate intolerance. And microneedling makes it worse for some reason. God bless, and I pray you recover your hair. Thanks for sharing.
GOD BLESS YOU! THANKS FOR YOUR VIDEO! I AM HAVING THE SAME SITUATION!
I have this same issue, and I had to go to 3 dermatologists before someone properly diagnosed it and took the proper steps to slow it down. It is amazing how much doctors DON'T know!!!!
What are you using to treat it
Thank you so much for this. I've been recently diagnosed and have not seen many videos from other people who have it. How long was it before you started treatment? I think my symptoms started 3 yeats ago but didn't notice until about 7 months ago and have just started treatments.
Thank you! You are so brave! I have this problem too, I’m losing hair every day and my forehead looks bigger now 😢
You are welcome! Good luck, I hope you can get it to stop.
Thank you for this video, I have this but have never had a diagnosis. Now I understand the condition
Thanks so much for sharing! I too, am a sufferer - diagnosed during Covid.
My general doctor had no awareness but with later inflammation referred me to a dermatologist. However, I can't seem to get on top of the inflammation (and therefore, nor, the hairline recession). I am taking Plaquenil, but doesn't seem to help for me at least and just started a Tacromilus ointment for hairline twice a day - but after 2 weeks made me feel lethargic, foggy and caused eyelid oedema and sleep problems so, I am not sure it's the answer. Everyone's different as to how they react to things.
Thank you so much for giving me some other options and if nothing else raising awareness and being so brave! It's really affecting my self-esteem but I'm not giving in. Would love to hear back from you post your hair transplant appointment 😊
Thank you so much for your video! I finally recieved a diagnosis with this and started proper treatment.
What treatment are you on? Thanks. I hv it and my protocols hv been less than successful. Good luck 🤞🏻
@@amycostello8259 just started dozyclycline, cobestersal cream, topical minixodil,
Hi Stephanie, thank you for sharing your journey. I haven’t formally checked if i have FFA but i experience similar problems minus the severe inflammation about 10 years now, I’m 43 years old by the way. And because i did many eyebrows embroidery procedures since about 20 years ago I can’t really tell if I actually lost the eyebrows hair , all I know it has been thin all along. And i never experienced inflammation on my eyebrows. Mild inflammation on the scalp yes sometimes, itching and mild flaking along the hairline , never thought it was FFA I thought because of hair dye or hair products. Recently i had PRP treatment for 6 times , about 2 weeks apart so about 3 months and i saw a big difference. Some smooth areas still not grow yet but the sides and corners are so dense and I’m so happy. In addition I’m using minoxidil twice a day and microneedling the area with the tinniest needles 0.25 mm every other day. I hope and pray i can reverse this FFA thingy, I’m going back to see my dermatologist to check if i need to have more PRP treatment to maintain this result.
Once again thank you and best of luck !
Hi, I too have done PRP injections with so far no big results (3rd and last injection one month ago). I hadn't heard of microneedling for this condition. Every other days sounds really frequently, did you do it yourself?
Hi Stephanie, thank you for the video. I have FFA and the Cystic Acne ( I wonder if there is a correlation?). I had the biopsy, the same areas of the hairline, eyebrows and eyelashes. I’ve also had the same treatments as well. The only difference I’m not using the antibiotic you were using I was prescribed the spironolactone 75mg. I also wear glasses that rub out the remaining baby hairs that are so fragile. I wish, wish, wish I had your length at least the length could cover the bald patches in some way. It is so depressing most times. Thank you for your courage and spreading awareness 😔.
Hi Regina. Thanks for sharing. I'm taking spironolactone too! It's more for my cystic acne, which is why I always forget to mention it as a possible hair growth treatment. I know it can be depressing. Stay strong!
I saw your full video today. I want to say one thing that you are very brave and confident because you are telling all the problem that you are facing. I am also facing same problem including alopecia areata also. Your video is 9 moths old. How is your hair's condition now?
God bless you and thank you for creating this video. Every time I look in the mirror it's really the only thing i see. The only thing that worked for me was MSM , but it gave me crazy nightmares and as soon as i stopped using it, my hair shedded like nothing ever happened. I then used Rogain and it just gave me headaches and nothing was really happening. I used every oil and herb, nothing changed. My left eye is always red and my skin feels very dry and so does my hair. I pray we all find a solution soon.
so many quacks for dermatologists you get to see that first hand when you start experiencing this. glad you can somehow cover it altho mustve been difficult to endure ik.
Thank you. I'm.on this journey x
You got this! Good luck!
who is your dermatologist.....she is WONDERFUL. I will travel to see her!
Hey Stephanie! Can you please tell what topical steroids you have used on your eyebrows? I am a man and my hair loss journey was very similar to you except that I also lost my side burns. I was suggested two different topical steroids by two different doctors. I'd like to know which one your doctor suggested. Thank you so much for this video.
Hi Stephanie, I believe I have the classical variant of lichen planopilaris. I have not been diagnosed with it though. All say it's androgenic alopecia, telogen effluvium but really, they cannot tell since lichen planopilaris can mimic other alopecic conditions. I think a method to try is to stimulate new follicles through micro wounding or microneedling and adding growth factors. New healthy skin with the right signalling has the potential to grow new hair. I too believe my condition was caused by stress.
Yes, I received Keralase laser treatment which causes micro wounds. It was helpful. I hope you see improvement with your condition.
This is a condition that was considered rare and now is becoming epidemic. Slow diagnosis and uninformed doctors are not helpful in slowing down progression. We need more research to find a solution as its impact is significant on people's quality of life.
I agree completely. Better medical care and improved treatments could really help us all from losing a lot of hair.
I’m absolutely agree with you same happened to me for three years they didn’t know what I have till I asked them myself for a biopsy, any dr I was going they were said you have a beautiful hair you might have seborrhea dermatitis so they put me on so many steroid
Covid
@@khha3797what happened after biopsy
Only since women have been talking about it openly. This "epidemic" has been ruining mens lives for all of time.
Have you seen any regrows since you made this video? It’s April 2024, what is your hair situation now? This has devastated me.
Have you tried mirco needling? It stopped my hair loss
I have FFA too...began losing a LOT of hair but doctors blamed it on my age...late 60's...my hairdresser kept bringing it up b/c she had a client who had lost the front half of her hair from ear to ear and she was worried it would happen to me. The only reason I finally got a late diagnosis is b/c I was refereed to a dermatologist for some skin plaques..prior to that appt I'd read the derms are the docs who diagnose hair problems. At that appointment I asked..the doctor didn't miss a beat (young female, just finished her internship, it was her first year practicing.). I lost so much time b/c of inept docs gaslighting me using age as the reason for the hair loss. That inch of hair that is gone in the front is GONE. When I finally got a diagnosis I was Rx's topical steroids and minoxidil...IF you are losing a lot of hair don't let the docs blow you off.
Did or do you have a neck/spine injury? I have 3 bulging and two herniated discs in my neck. Which also pinced a nerve.
I started to get that during physical therapy. The therapist used a towel wound up to stretch my neck. When the hair didn't come back, I then put it on stress. My mom is in the mid stages of dementia.
Anyway i wanted to know if we can attribute it to a spinal injury.
Thank you.
I was diagnosed with this today and about to start steroid innections, antibotic inflammation pills and steroid ointment. I pray it works.
Good luck!
@@stephaniesangiovese thank you. Also enjoyed your video very informational.Blessings!🙏🏽
Thank u for sharing your experience, I’m in early stage .. u could save me ..
I think i might have this but have seen 3 professionals who have said i dont and i just dont have the money to see anymore my hair is thinning in same areas no bald spots does it thin at first or is it noticable bald spots thank u
What about the transplant? Could you do this treatment?
Also, please consider emu oil or rice bran oil, especially if you have salicylate intolerance. Not magic cures but might help to lower the inflammation. A lot of oils and foods are high in salicylates. Best of luck and God bless!
Hey, first i would like to say that you're a real paragon of strength, i'm just a 26 year old guy who realised i got my grandads' shitty genes and am going bald, i was freaked out horribly since i'm a metalhead and always had really glorious blonde hair which was a big part of me (people always told me i should play an elf in movies), can't imagine what it must be like for a woman. But i have a question since you sadly have experience on the matter and i can't find an answer anywhere, been stressed about this for 2 months now. I've finally managed to accept my fate as a bald dude, but i've noticed i'm losing more eyebrow hair than i usually do, don't see any inflammation or anything, they look normal aside from the increased shedding (i'm guessing that could be due to my experimentation with finasteride but i'm not sure), so, when you were losing eyebrow hairs, did they start growing back right away? Mine fall out more than they did but they also all seem to be growing back in a relatively normal time frame (2-3 days for new ones to sprout i'd say), and the ones that just started growing stay there. I'd just like to know what it was like for you and if normal regrowth (despite the seemingly bigger shedding) means that it's probably not FFA? I thank you if you manage to find the time to calm my nerves before i go crazy, also you look beautiful and your hair-loss isn't really noticable to a layman like me :D
What a pretty lady though !! ..you would look absolutely gorgeous hair or not !
I also have this. I started by having cystic acne. I've never had acne. It started on my chin, then hair and upper back. I've yet to find a doctor to help. I started reading everything I could to help myself. I use a dht blocker shampoo. I used minoxidal for 3 years. Nothing. So I stopped. I take vitamins, so many vitamins! All this started at age 58. After I had to have a total hysterectomy. I am in a stressful relationship too.
Have you tried the transplants yet? My dermatologist didnt have much knowledge of frontal fibrosing alopecia and i lost hair for a couple of years before i went to another dermatologist that did a biopsy confirming the fibrosing alopecia. I have been on doxycycline (similar to your antibiotic) for 4 months now and the inflamation and seborrheic dermatitis is pretty much gone thankfully. I am going to start using minoxidil (are you still using that?) and am thinking about transplants. My hair looks very similar to yours. Please let me know how you are doing. Thank you for the video!
I noticed u mentioned SD. I’ve had this for 5 years and it’s still slowly progressing. Nothing helps and the worst part for me is the scale on my scalp. I scrape it off gently with my nails and it comes back instantly. I have to wash my hair every day or the scale gets so thick it starts to matte my hair down. It’s beyond awful. I’d gladly go bald just to be free of the scale but it’s a slow go. Was scale/SD anything like this? I tried doxycycline early on for a few weeks but was so nervous about taking and at the time thought it was making my skin worse so I bailed early in but did really start noticing the after I stopped it. It was there prior. I just hadn’t started trying to get it off prior to that bc I was still in the too scared to touch my hair phase for fear more would fall out.
@@esposiam very sorry to hear that. Are you still seeing a dermatologist? I had scaling and my skin was red and totally breaking out before i started the doxycycline. I was using some steroid creams that worked a little bit, but nothing like the doxycycline. I started at 40mg a day and bumped slowly up to 100mg a day, and that seems to work very well with the SD which i am convinced fueled the alopecia as they were occurring in the same areas. Ill stay on it forever if i have to. It seems my alopecia has stopped. Ill get another biopsy next year to see if thst is true or not. The minoxidil foam seems to be helping a little bit as well....cant hurt to keep trying things. I hope you can find a dr that can help!
Hello, thank you for sharing. My Dr. told me to use rogaine and there are no solution for it. How is your hair now? Please share me your dr Address.
I was just diagnosed with FFA yesterday ( I am 30) I lost much of my eyebrows back in 2020, and was having injections in them to try to regrow them, when my dermatologist noticed my hairline and immediately knew what the problem was. She started injections in my hairline and she wants to start me on hydroxychloroquine. What part of your treatment did you find most helpful? Did monoxidil help?
For me, the steriod injections and the fluocininide really helped stop the inflamation and hair loss. For hair regrowth, PRP really helped. I think minoxidil helped in the begining, but it got to a point where it did all it could do. I'm also on hydroxychloroquine. I've been on it for about 3 years. Good luck with your treatments!
Hi did the treatment work for you?
@andreahicks6770 The steroid injections were not helpful for me, but using hydroxychloroquin twice a day for the past year has significantly slowed my hair loss. I have not, and probably never will, regrow my eyebrows, but I have definitely seen a slowing in hairloss in my hair line.
Thank you, I just had a biopsy to see if this is my problem, I’ll find out the results in 2 weeks. Do you think these treatments have stopped your hair loss?
Yes they definitely have. I think i would have lost a lot more hair without them.
Hi Stephanie.....How are u.... I am from Bangladesh.... I have suffering FFA for 10 years..... I had shown so many Doctors......bt no one understands about conditions.... they give me Vitamin D vitamin C and Iron..... Day by Day my hair is just decreasing.....bt i don't have any options... Now I am pregnant...... please tell me what can I do.....do i eat medicine by my own.... I am really very depressed
Hi Stephanie, I also have FFA. I'm a RN and was diagnosed in 2018. I have recession in front and above my ears.Also, my eyebrows are sparse. I think the steroid injections are the best because it is the inflammation that causes the damage. I am 59 and my hormones have also thinned out my hair overall. Have you ever tried a topper or wig? I have done a lot of research and the best most natural looking hairlines for a wig are Moramode and Nuola wig companies. Nuola is based in London but check them out. The wigs look beautiful. No one would know you are wearing a wig. They do virtual consults. Going back to FFA. I hope you were told that FFA will burn itself out in about 10 years. Also, with hair transplants, they will not do one on you until you are in remission for at least 2 years. Otherwise, your hair would fall out because it would get attacked. It's frustrating to say the least but at least there are cosmetic solutions. There are no cures for this as of this date.
Thanks for sharing. I haven't tried any wigs, because the way my hair falls it covers most of it. But it would be something i'd like to try! I've been in remission for almost 2 years, so by the time i get to my transplant consult, i should be good to go.
I'm on this journey too. Year 6 so I have 4 more years to go until it burns itself out. Lost about 5cm arround my frontal area. Am now on a journey to wear wigs. So tired of the physical and emotional Rollercoaster ride with this condition. Good luck all 🙏
Good luck to you too!
@Kerry M i too am at 7 years and although it has slowed, it has not burned out just yet - here's praying even harder 🙏 i am 58 years old and probably going to look into hair toppers soon 😀 I am a retired Nurse Practitioner and although my dermatologist had the diagnosis spot on, I encountered a lack of treatment modalities that I think should have been provided, and thus experienced more hair loss than I may have had if certain treatment options been implemented sooner.
I’ve had FFA for over 30 years! It had not “ burnt itself out” in my case. I’ve been able to keep it at bay, at best, with consistent use of a clobetasol solution recommended by my dermatologist.
So you said that at this point the progress of ffa stopped and now just have to keep it under control. And how did the dermatologist suggest to do that? By continuing the meds?
Yes you have to continue the meds until the disease "burns out" which apparently happens after several years.
Not true in my case. I’ve had it over 30 years.
I’m am dealing with this. I had a biopsy and it showed numerous things but they settled on this. What I’m finding is that my insurance would not pay on the biopsy and so my flex spending account won’t pay also. I’m scheduled to get injections tomorrow in the scalp and I’m guessing my insurance won’t pay for that also. Did you run into this? I have no idea what the injections will cost( cortisone injections.
My insurance covered my biopsy and cortisone, but anything after that they did not cover (PRP, Keralase). I guess it depends on your insurance company. I can't say how much it would cost w/o insurance, because i really don't know. I hope it at least helps stop your hair loss.
I, too, am concerned about coverage for steroid injections as insurance typically considers hair loss to be cosmetic (otherwise they are covered as I am on low-dose steroids for 3 different medical conditions and have received injections in the past for allergic reactions and so forth). But, a savvy provider knows how to change billing codes if they care to so fingers crossed for both of us. Biopsies are always covered by US insurance to my knowledge. They are necessary to make a diagnosis, so you may want to appeal the coverage denial.
I ' ve been diagnosticated with same LPP in 2017. I remember PRP procedures, mezo and laser terapy really helped me. 5 yrs later, still dealing with it. 🙄
Thank you dear for sharing can u tell how much it costs?
treatments vary in price, in total i've probably spent between $5,000 and $10,000 for all treatments, medications, and medical visits.
Is that before or after insurance?
When it comes to PRP, do still consider this method as an effective solution in your case? How long it total you have done it and are you doing PRP to this day?
I have ffa, did a series of 3 PRP and unfortunately didn't get any results
Thanks.. I am also suffering from Lichen planopilaris from last 12 years, but it's patchy scarring hair loss and I've lost 50% of hairs in my scalp.. it's natural to have compiling stress in such situation.. don't know what to do?? Dermatologist have been constantly prescribing with immunosuppressants, HCQs and topical steroids
It sounds like you are on a lot of the same stuff as me. Unfortunately, there's not much we can do. I hope you find something that works for you.
@@stephaniesangiovese thanks
Going through right now, my hairline has shifted two inches back, my forehead is super shiny and despite derma rolling I see no growth on my hairline, I feel sharp stinging, burning sensations all around my hairline too, I feel like I’m balding, I feel so depressed about this and feel like giving up.
I'm so sorry. Please go see a dermatologist if you haven't already. They might be able to stop or slow the hair loss with some medications and may be able to help you with your pain too. Please don't give up!
@@stephaniesangiovese thank you for your kind words, I live in the UK and it’s been extremely difficult to get through a dermatologist though the NHS, I’m seeing a private dermatologist in two weeks time as that is the only available date, I’m just scared to see how much more hairline will I lose from this awful disease.
@@thepersonapoet I hope this dermatologist can help you! if it makes you feel better, once i started on my treatments, my hair loss stopped fairly quickly. I know it's different for everyone, but maybe it will work for you too. :)
You had mentioned numerous treatments. So when you say as soon as you started on treatment the hair loss stopped pretty quickly, which treatment are you referring to?
BTW, you are still a very attractive young woman and until you pointed out the hair loss on the sides I would of never known
What helped your eyebrows grow back so nicely?
does insurance cover treatment such as finasteride since it's an autoimmune disease?
I don't know about finasteride because i didn't use it. It did cover my cortisone shots and perscription applications. But once I started getting into the more expensive treatments like PRP and laser, it definitely did not cover those, even though this is a medical condition.
Mine does cover dutasteride injections, which are very similar to finasteride ones
Did your doctor tell you to stop rogain? I heard rogaine is forever
After a while, it was evident that the Rogaine wasn't doing too much for me so we both decided it was time to stop. But yes, it is a forever treatment.
Beware, it's autoimmune and you are likely to have more poorly diagnose diseases. I have FFA, achalasia and RA. I had a similar experience with doctors, most don't care. Doctors stay in their lane. If you don't have an illness they treat, go else where. One of my doctors decided my parents must have been bald. They both die at a ripe old age with messy bed hair that was full and stood straight up, lol. I am taking hydroxychloroquine for RA but the RA has started to progress. I have suspected that dairy doesn't agree with me and have been off that for a while. Recently I have even stopped eating foods with the tiniest amount of dairy. Inflammation has improved in my hands and feet and sinuses after about two weeks. Past menopause, autoimmune diseases increases. I decided to give pelleted hormones and thyroid meds a try. Wow, I have new energy.
I am sorry you are so young to have FFA. You are providing good information and comfort to others. Good for you.
Thanks for the support. I hope you continue to see improvement in your conditions.
I got diagnosed this summer.
Can pregnancy trigger it? I’m 30 years old and 8 months pregnant with my first. I’m losing hair around my temple areas and it looks so bad I can’t stop crying 😔 it’s really hard to hide
Dr Berg says “Purslane “ heals lichen . Whether it’s in the hair or wherever. So I bought some because I had an issue in my pubic area was attacked , and in groin . Then my frontal edges on my head was attacked. So I tried the “Purslane “ and it is working on pubic area so far , I just started taking it so I’m waiting to see if it works on my frontal edges
What a great hairdresser to recommend you seek medical advice. I cannot believe the number of people who have seen my hair loss and did not suggest seeking medical advice. I even had to have eyebrows tattooed, but beautician said nothing about seeking medical advice ......... sigh.
yes, she is amazing!
Same, my hairdresser never mentioned it and I really wish she had. I saw here every 2-3 months for 5 years. If she had told me when she noticed the hair loss first start, I could have gotten treatment immediately instead of 2-3 years later.
ACUPUNCTURE helps me to manage alopecia. Best part about it: no side effects.
This can be very expensive though. Just the plasma can be around $4,000.
Three injections of PRP cost me about 700 euros in Spain
What are the early symptoms of ffa.
For me it was red inflammed patches on my scalp and when my hair fell out naturally, it didn't grow back.
For me it was a lot of eyebrow loss with subsequent itching. I started using a strong, topical steroid on my brows as I have a few meds on hand for my eczema. My brows grew back for the most part and then the itching started again and they started falling out again (and repeat). I also developed white bumps all over my face that I've been told is sebaceous hyperplasia. Then I noticed hair thinning at my hairline on one side of my head, which is now spreading to the other side and above my forehead. This all occurred within six months. I have read in medical journals that the majority of FFA patients also have brow loss, so my story is not uncommon.
omg, mine started the same way. I wear a mask at work, so I thought my hair fell out due to wearing the mask.
Wow! It can be so hard to figure it out sometimes.
Try progesterone
But wouldn't getting a transplant be a waste of money since your body is attacking the follicles in that area? So even if you do get a transplant,the body will attack those new transplanted hairs
That’s interesting to consider 😮
My hair started changing after I received the COVID vaccine. I'm not sure if it's related or aging. Whatever the reason it sucks!
What your experiencing is more than likely telogen effluvium which is common after a virus that stresses the body were you quite unwell ? Telogen effluvium was first officially recognised during the Spanish flu pandemic, I've had it 5 times the good news is it is fully reversible and you don't have to do anything eventually your hair falls back into its own growth pattern it's just freaking out a bit now
@@djfhfh I have no health problems and I'm healthy. I never had covid and I got the vaccine as a preventative measure.
@@keyshajeffrey5685 vaccine can also cause it
Your gonna laugh at my story, but im going though the same bs. started panicking turn 20, had myself immediately start finasteride, didnt work turn 21 which is when i had myself c-strated and started bicalutamide and dutasteride because i assumed because im a bloke it must be because male hormones. lost trust with first few dermatologists who didnt even listen to my concerns. 22 start more aggressive treatment jumping on the supplement train, you know, rosemary water, hard water filter/water softener, microneedling, ugh. then even more aggressive treatments, kx 826, ru 58841, other peptides. 23 i finally see a dermatologist who was able to give me a diagnosis, im practically in tears at this point having tried oral minoxidil with everything previously mentioned. been on literally everything, 24 now been on lymecycline and betamethasone since july, the headaches from the steroid arent very pleasant and the antibiotic gives me stomach pain.
in the end, i have failed to prevent this freakin disease from not taking over my life. im mostly in doors these days totally cut off from used who used to talk to me. i do feel upset for people calling my a narcisist or trying to disassemble everything. therapists arent helping "you need to go outside more